Mind

Under Wraps

Evelyn Herwitz · November 12, 2013 · 3 Comments

Ah, yes. It’s that time of year when it takes 20 minutes to bundle up and head out the door. Maybe not for everyone, but most certainly for me—all those snaps, zippers and the inevitable struggle to grasp the wrists of my sweater so the sleeves don’t bunch up inside my coat.

I’m already into my full-length down Eddie Bauer, gloves, a wool beret and scarf, sometimes even leg warmers. All this, of course, over two sweaters, warm pants and fleece wrist warmers—my go-to outfit for working at home, writing at my computer, which inevitably makes me cold even with the heat on, because I’m sitting still for so long.

Even if all those layers can sometimes feel like a mummy’s wrap, however, it’s nothing compared to the bulk I used to wear as a kid.

Remember snow pants? With skirts? In my elementary school, in the ‘60s, girls couldn’t wear pants to school. I had this water-resistant pair of red snow pants, with suspenders, that my mom would insist on me wearing over my plaid wool kilts to school—that, plus tights, of course, red rubber overshoe boots (the kind with the little elastic loop that you slipped over the rubber button to supposedly keep out the snow), a matching red parka with a hood and red wool mittens.

Those snow pants, practical as they were, made my skirt bunch up at the crotch. I hated wearing them to school. I would waddle out of the house to the bus stop. Getting dressed for recess was a big, long process—probably harder for the teacher than for us kids.

Playing in the snow at home was another matter. I loved to make snow men and snow angels in our front yard, and the snow pants were tolerable for those activities, mainly because I wore pants underneath.

For fall, I had a tan wool duffle coat with toggle buttons. No fancy light-weight, super breathable, heat-retaining fabrics back then. Most of the time, wool was sufficient.

Once, however, on a chilly late fall day, out on the playground, the wind kicked up. A couple of my little girlfriends and I huddled together and complained to the teacher in charge. “You’re just a bunch of sugar plums,” she teased. “It’s a beautiful, sunny day. Go and play.”

To which we responded by walking arm-in-arm within her earshot and chanting, “It’s cold, it’s freezing, it’s terrible!” We’d have been better off running around, but we had fun being miserable. Then we played hopscotch until the bell rang.

Some 50-plus years later, I’m still of both minds about the weather. There’s that part of me who absolutely hates the cold here in New England, all the layers and the numbness in my fingers and transitioning in and out of cold when I venture out for errands or appointments.

But there’s the other side, as well, who loves the four seasons, even snow, and views the challenge of dressing for my severe Raynaud’s as one more game to play. I may gripe, but ultimately, it’s all about finding the right clothes, giving myself enough time to get dressed and mastering layers. It also helps to have warm clothes that are comfortable and make me feel and look my best.

Certainly not snow pants.

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.

Carpe Diem

Evelyn Herwitz · November 5, 2013 · Leave a Comment

A glorious weekend, indeed, this past. Leaves crinkle and swirl in honeyed showers as temperatures hover now in the upper thirties. But Saturday afternoon, hours before we turned back the clocks to usher in bare-branched November, the trees were still lush with mulled hues of cinnamon, ginger and burgundy, and the air was warm.

Al and I looked at each other. It was simply too beautiful to stay indoors. So we put on our hiking shoes and climbed into the car with Ginger, our aging Golden, whose reddish fur matched the day’s pumpkin glow. It was a bit of a scramble. Her haunches are arthritic, and she needed a boost to the back seat.

But once we arrived at our favorite hiking spot, about 20 minutes from home, Ginger was in her element. She’s 15, now, a centenarian in human years, but she can still trot along with us, up and down the gently sloping trails.

We took our time, pausing as I snapped pictures of milkweed pods—my childhood favorite for late autumn—and a slender sapling glowing gold in the midst of deep green pines. Ginger loped ahead to catch up with Al, then turned and waited to be sure I was still coming.

As we climbed a steep hill, she kept apace with Al. I brought up the rear. I’m slow at this, my breath shortened by lung scarring from my scleroderma. It always takes a while before my breathing can catch up with the exertion of walking up an incline. But as long as I pace myself, eventually my metabolism matches my intentions.

And there was so much to savor: cream-colored mushrooms large as saucers, a hillside aflame in scarlet shrubs, tree chunks carpeted in lime-green lichen. Deeper into the woods, all we could hear were Ginger’s panting and our feet scuffling through crisp leaves, interrupted by the occasional thrum of a private plane flying somewhere overhead. The air was fresh, sweet, enriched by decaying foliage.

We stopped by a bridge high over a brook, the water low from lack of rain, but still burbling. Ginger wandered back and forth, then patiently waited as we pulled tufts of loose fur from her hips. “You okay?” I kept asking her, once we moved on, as she trotted back to check on me.

Rounding through the wildflower meadow near the trail head, Al stopped to crack open a dried milkweed pod and strew its glinting silk to the light breeze, ensuring a good crop for another visit. Late afternoon sun illumined leaves like stained glass.

My knees gave out just as we walked down the road to the car. Perfect timing. Ginger clambered into the back seat with some help and lay down, panting, with a Golden’s grin.

“I’m so glad we decided to go,” I said to Al. He smiled and nodded, then drove us home.

It’s Not Over ’til It’s Over

Evelyn Herwitz · October 29, 2013 · 6 Comments

I don’t know about you, but I’m exhausted from watching the World Series. And even with the Red Sox now leading three games to two, the outcome is still anyone’s guess. With the exception of the Game 1 rout of the Cardinals at Fenway—a misleading, far-too-easy, albeit satisfying start for us Red Sox fans—each ensuing game has been a nail-biter through the bottom of the ninth. Even though most games have ended around midnight here on the East Coast, I’ve had to stay up and read a bit before falling asleep. Too much adrenaline.

Would Cardinals slugger Carlos Beltran recover from his bruised ribs after crashing into the Fenway fence to catch the fly ball that cost the Sox a grand slam in Game 1? Would Red Sox slugger David Ortiz break the Cardinal pitchers’ lock on our offense and hit another one out of the park? Would any of us Sox fans recover from the obstruction call that threw Game 3 to the Cards?

My sister, who lives in St. Louis, is a die-hard Cardinals fan, so we’re enjoying a friendly rivalry of evening texts during each game. “I’m not talking to you right now,” she wrote after I texted how they got lucky with Beltran’s amazing save. I tried not to gloat when we won that first game, a good thing, because the next two games were heart-breakers for the Sox.

After we evened the series with Game 4, thanks to Jonny Gomes’s three-run homer and closer Koji Uehara’s picking off pinch-runner Kolten Wong at the bottom of the ninth with Beltran at the plate, she wrote, “Feel better?”

Yes, I did. This series gets settled at Fenway.

So, what does this have to do with living with scleroderma, you ask?

Well, let me tell you. First of all, watching a great World Series between two outstanding teams, one that’s your home team and the other that’s your sister’s, is a great way to forget about anything else that’s on your mind.

To wit, in the scleroderma department, my latest mishegas is yet another infected ulcer, this time in one of my toes, that necessitated starting antibiotics once again. Just as I was marveling how my toe was responding so well to the drug, returning to its normal color and shape, no longer waking me up at night with pain, a friend who is a geographer at Clark University shared her recent experience reviewing a National Science Foundation project in Baltimore (stay with me, this is relevant) that found conclusive evidence of antibiotic-resistant strains of bacteria in the Chesapeake Bay watershed.

This, in itself, is not news—ARBs, as they are called, were discovered this summer in the Hudson River, and have been found in water supplies around the world for at least a decade. The problem, as my friend explained, is that all the big pharmaceutical companies that have developed antibiotics, including Pfizer, one of the first large-scale manufacturers of penicillin, have discontinued their research and development of new antibiotics to treat the new resistant strains because it’s simply not profitable. This insidious public health problem, akin in potential impact to climate change, was discussed in a recent PBS Frontline program with infectious disease specialist Dr. Brad Spellberg. Scary news for one too prone to infections and anxiety.

No wonder dystopian movies are all the rage. Take me out to the ballgame. Please.

Second, watching the match-up between such worthy contenders is a lesson in mindfulness. Every time our guys are at bat or on the mound, I’m right there with them, totally focused on the other guy’s next move. Will it be a fast ball or a change up? A ball or a strike?

Each player has his little rituals for good luck, to manage tension—Gomes screws his hat onto his head before entering the batter’s box for the next pitch, Ellsbury adjusts and readjusts the strap on his batter’s gloves, Uehara takes a deep breath and peeks over the tip of his mitt before hurling another strike. I have to remind myself to take a deep breath, too. It’s only a game, right?

Finally, watching a great World Series is fun. The wily pitchers! The burly sluggers! We’re behind! We’re ahead! The bobbles! The beards!

All of us are more than just the sum of our health problems, our worries, our fears. The world can be a dangerous, frightening place. But for these few nights in late October, when the best Boys of Summer face off for a record-breaking, statistic-busting contest of will, strength, talent and strategy, I’m glad to be right there, cursing, cheering, hoping against hope for nothing more than the Sox batter’s ball to fly high and true, into the stands, into the glove of some grinning, bright-eyed kid who will remember this night for the rest of his life, believing that anything is possible.

Snapshots

Evelyn Herwitz · October 22, 2013 · Leave a Comment

Monday, Penn Station, 6:33 p.m. I’m standing with a few hundred other people, staring at the Amtrak departure board, hoping that the Northeast Regional is leaving on schedule. Alas, it is not. The encouraging ON TIME message for our 6:43 departure shifts to 20 MINUTES LATE. Then 35 MINUTES LATE. But as the red digital clock display clicks past that deadline, no sign of our train.

I stare at the board, survey the cavernous waiting room, checking to see if I can figure out where a hoard of people are streaming out of one of the gates, indicating our train’s arrival. I listen to classical music—right now, Erik Satie— piping through the PA system, alternating with NYC and Jersey accents announcing all the other trains that are leaving on time, interspersed with a ubiquitous, calming woman’s voice telling us to watch for bags left unattended and other suspicious behavior. “See something, say something,” she melodiously cautions.

Travel is exhausting. I am wrapping up two days of business meetings in metro-New York—much of it devoted to the fall Board of Trustees meeting of The Good People Fund, a wonderful Jewish philanthropy, and a late Monday afternoon meeting with some of my favorite clients, who are based in Manhattan. I enjoy seeing all of these people, learning from them, feeling like I’m making an important contribution as a volunteer and through my consulting practice.

But I am tired. Very tired. Travel requires much vigilance. I have been extra-careful of my bandaged ulcers, wary of getting an infection. Over and over, I’ve cleansed my hands and bandages with anti-bacterial hand gel, just to be safe.

I’ve packed my overnight, rolling suitcase (a great gift from my sister for my birthday last spring) as sparingly as possible. But still, it is heavy to schlep up and down stairs when there is no escalator or ramp, and my right wrist is tired from pulling it around Midtown. I’ve worn my favorite, most comfortable shoes. But my feet are wearing out.

And I’ve made many strategic trips to the bathroom. I really, really don’t want to get stuck in the subway or walking long city blocks, suddenly needing to go.

I’ve tried to balance all of these logistics, all the physical strain of travel, all the concentration and participation in hours of meetings, with some moments of pure pleasure. If I push too hard without pausing, I feel spacey and sometimes even woozy. This is incredibly frustrating. But my body just has limits. And there is wisdom in honoring that.

So this trip, I squeezed in a brief tour of the Rubin Museum of Art, a little gem on West 17th Street that contains stunning art of the Himalayas and surrounding regions. As I strolled through the galleries, serene Buddhas offered a moment of peaceful reflection, and my breathing eased.

Snapping photos on my iPhone between appointments also provided a good way to stop, slow down and pay attention to local color—chess players in Union Square and a farmer’s market, the slice-of-pie silhouette of the Flatiron Building and my beloved, iconic Empire State Building.

I got so immersed in taking photos, in fact, walking uptown toward Penn Station, that I arrived with only 15 minutes to make one more pit stop and pick up a sandwich and drink for supper on the train, before boarding. Or so I thought.

Standing here, watching, waiting. It’s nearly 7:30 p.m. before the voice on the loud speaker announces that the Northeast Regional is leaving on Track 8W. I hustle with my rolling bag to the gate. Settling into my seat in the Quiet Car (no cell phones or loud conversations—would someone please tell the young lady a few seats back to read the sign?), I’m relieved to finally be on my way home

As our train emerges from the Penn Station tunnels, I pause from the follow-up email I’m writing to savor the view—the New York City skyline, sparkling like diamonds and rubies against the black night. My hands feel fine.

Handle With Care

Evelyn Herwitz · October 15, 2013 · Leave a Comment

Plump, green-gold, Worcester’s pride,
transported through autumn skies
in a box marked “Handle With Care”

sleep eighteen Bartlett pears,
hand-picked and polished and packed
for deposit at my door . . .

—Stanley Kunitz, My Mother’s Pears

Each fall, on Columbus Day weekend, the trees in our neighborhood tip from green to golden, the sugar maples burnished bright, some flaming like torches, others revealing gray limbs, no longer cloaked. Ginger revels in our daily walk around the block, her reddish coat blending with the fallen leaves. Each curbside pile must be thoroughly investigated. And so we linger by the side of the road as she sniffs.

Gazing at boughs overhead, scarlet, orange, honey-gold, green, I realize that my mother would have been 91 this weekend. Her birthday was on the real Columbus Day, October 12. This comes as a surprise. It has been 14 years since she died, in the spring. I have lost track of her age.

Reminders surface throughout the weekend. I change the sheets and pause to straighten wrinkles, hearing my mother’s sing-song chant as we float a laundry-scented top-sheet up and down, up and down, until it settles onto my bed, “Nice and smooth, nice and smooth!” I am maybe four years old. This is a favorite game, and I sing along with her. Nice and smooth. Her philosophy of life.

Her death was not. In the winter of 1999, she brushed a hair from her neck and discovered a lump. Within a few weeks, it had grown as big as a grapefruit. Surgery left a long, Frankenstein-like scar from neck to shoulder. Soon the tumor returned and bloomed into a massive lump that would not heal, despite radiation and one round of chemo. Her oncologist begged me to explain to my parents the news they seemed not to comprehend—there was no use continuing treatment.

I sit in a doctor’s office Monday morning, answering questions about my family’s medical history. My mother died of anaplastic thyroid cancer, I explain. The physician’s assistant rapidly types at the computer, clickety-clack, clickety-clack. Later, appointment nearly done, I sign up for online access to my chart and lab reports. I select a security question for my password: “What is your mother’s maiden name?”

In the afternoon, I nix my to-do list and drive to the boyhood home of the poet Stanley Kunitz. There is an open house today, an annual event sponsored by the Worcester County Poetry Association, honoring the memory of our hometown Poet Laureate.

I climb the steep front steps of this modest home decked with bunting and marigolds in a neighborhood of three-deckers. Nudging open the front door, I step into a Victorian time capsule of dark wood and velvet plush. Mounted deer heads stare from the walls. Glass globes on brass stands gleam from a side table. A stuffed peacock grasps a golden pear in its bill. The decorations reflect the owner’s tastes, but the details are period-true.

I meet local poets and hear some of their work, and Kunitz’s, on the back deck, surrounded by autumn flowers and a graceful pear tree, still holding all of its leaves, still green. I learn about his tragic childhood—a father who committed suicide before he was born, a step-father who died of a heart attack while hanging drapes in this very home, two weeks after they moved in.

We listen to a tape recording—a cassette from 1985, when Kunitz returned to Worcester for a celebration of his work—his voice booming, strong, even as an octogenarian. He reads “My Mother’s Pears,” a poem of thanks to the owners of this home who tend the backyard pear tree. They became close friends after his visit to the city, restoring his sense of belonging, healing his grief over lost fathers.

Each fall they would send a box of pears from the tree that still grows in the back yard, a tree that Kunitz helped his mother plant, as a boy. An ample crop of pears grew each year, the owner tells me, except the year that Kunitz died, just shy of his 101st birthday, in 2006. “That year, all the pears fell off the tree,” she says. “It was supernatural, as if the tree was mourning his death.”

The night my mother died, she sipped air, slowly, slowly, like a fish out of water, then slipped away. No tree shed its fruit, no flowers their blossoms. I just knew that her soul went elsewhere. I have not heard from her, since.

. . . I summon up all my strength
to set the pear tree in the ground,
unwinding its burlap shroud.

It is taller than I. “Make room
for the roots! my mother cries,
“Dig the hole deeper.”

Mind

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