Sight

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.

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.

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.”

Surfacing

Evelyn Herwitz · October 1, 2013 · 2 Comments

At the inside crease in the first joint of my right middle finger, a charcoal gray chip of calcium is working its way to the surface. This has been going on for months. But now the tip of the chip is visible, and if I try to budge it, the sharp edges pinch.

So I need to wait it out. Kind of like a tiny submarine that isn’t quite ready to emerge. If only it contained miniaturized scientists, à la Fantastic Voyage, on a mission to repair my immune system.

I’ve discovered over decades of managing calcinosis that it’s better to let nature take its course than try to pry these odd calcium stones from my fingers. For one thing, I can’t really grasp a pair of tweezers tightly enough to dig them out. For another, it really hurts to do this. And disturbing the skin increases the risk of infection. So I use a combination of Aquafor and antibiotic ointments, dressings and bandages to soak them out, gradually.

Most of the time, this works. Once, several years ago, I had to have a clump of calcium surgically removed from my left thumb because it was too painful and wouldn’t come out on its own. Turned out it was attached to bone. But that’s been the exception.

Patience. It takes a lot of patience to let your body heal itself. For scleroderma, there are no quick fixes or easy cures. And there are many aspects of this disease that won’t heal unaided, if at all.

But one of the things that continually amazes me is how my skin, abnormal as it is, still knows how to heal itself. It just has a much longer timetable than normal.

Many of my finger ulcers take months to heal; some have taken years. Some of them form because of hidden calcium deposits that begin to surface; others, at pressure points. And yet, they do eventually heal. Sometimes the skin grows back thicker and sometimes it retains flexibility. The ulcers may reopen, but at least for a while I’ll get a respite.

This week, I was surprised and very pleased to realize that two intransigent ulcers finally closed up—in fall, of all seasons. So I’m down to three bandaged fingers from five. This is a major improvement.

Whenever a piece of calcium finally pops out, I’ll roll it around between my fingertips, just to explore it. How does my body make these strange, pointy crystals? Some can be as large as an eighth of an inch in diameter and leave a small crater in my finger.

But once I’ve cleaned out the hole with peroxide and dabbed on antibacterial ointment and clean dressing, within 24 hours, my skin has begun to repair itself and filled in. It’s really quite remarkable. For all the strangeness of this disease, my skin cells still can repair some of the damage. This is comforting.

Of course, nature can use a bit of help. I take medications to improve my skin circulation, which is critical to healing. I’m vigilant and meticulous about skin care to minimize risk of infection. I change my bandages every morning and use ointment, moisturizer and white cotton gloves at night to aide the healing process.

I also try to be mindful of how I move my hands and grasp things so I don’t bang myself. I take extra precautions, like wearing cotton work gloves when cleaning or moving cumbersome objects, to protect my bandages and skin. And I dress carefully, often in layers, to keep my hands warm.

All of this takes patience, too. After 30-plus years of living with scleroderma, I’ve adapted to the rhythm of my body’s long healing process. Some days, I’m far less patient and rant. But as long as I’m not in any significant pain, I’m able to ride out the frustration and regain my inner balance.

Today, checking the calcium chip’s long journey outward, I’m just glad it’s located in a spot that’s mostly out of the way. Maybe in a month or so, it will slip free and my skin will heal over, once again. Until the next time.

Photo Credit: Derek Lyons via Compfight cc

Coyotes of the Mind

Evelyn Herwitz · September 24, 2013 · 2 Comments

Friday night, as Al and I were walking home from synagogue under a brilliant full moon, a creature darted across the street ahead of us. Ghostly white, scrawny, doggish, with pointed ears and a long, thin tail, it disappeared into a neighbor’s backyard and the trees beyond.

Coyote. Had to be. Though our Central Massachusetts neighborhood is not overly forested, there are enough woods in-between lots for a coyote to lace through in search of food. And there have been occasional sitings in our area.

I shivered. Often during the past few hot summer months and on recent days when I’ve been too busy to take an afternoon break, I’ve walked our 15-year-old golden, Ginger, after dark. She loves nocturnal smells, and the stars have been stunning. No more. It’s colder, anyway, now that fall is here, and I don’t want to chance it with a coyote on the loose.

But I don’t want to give up those evening strolls, either. As long as I bundle up, I love staring up at Orion and Cygnus while Ginger pauses to snuffle each and every fallen leaf by the curb. Risks abound. If all I do is focus on the bad things that could happen, I’ll imprison myself. And her.

According to the Massachusetts Division of Fisheries and Wildlife, you should yell, blow a whistle, bang pots and pans or shine a flashlight to scare off a coyote. Not my preferred mode for a relaxing walk around the block. Maybe I’ll just wait a week or so before we venture out late again, as long as it’s not too cold.

Much as I have no desire to face down a live coyote, there’s another kind that I’m much more accustomed to confronting: those hungry coyotes of the mind—anxieties about health, money, security, family, the future.

These I fight often. Scleroderma, as any chronic illness, births a band of them, trotting across my subconscious, wily, ghostlike. They appear without warning, gobble up energy and optimism, and howl loudest on those nights when I have trouble sleeping.

What if I end up in a hospital some day and get one of those super infections in my ulcers? What if I gag on my food because my swallowing is sometimes uncoordinated and there’s no one here to help? What if I fall and mess up my hands even more? What if something happens to Al’s job and we lose our health insurance? On and on.

But shouting at those feelings to go away, lecturing myself to silence the angst doesn’t work. It only seems to make those coyotes of the mind even stronger and more voracious.

No, especially if the anxieties have a basis in reality. Disease is disease. When your body doesn’t work right, it’s damn scary. As you gain experience coping, managing your meds and your symptoms and your docs, the anxiety dampens a bit. But the sense of vulnerability never goes away.

Better to shine a light on it, name what’s most frightening, acknowledge the storyline. Separating fiction from fact is the first step toward coming to terms with both the anxiety and the reality.

Power that light with compassion for your trembling, I try to remind myself when I find myself in the grip of wild fears. The more self-compassion, the longer you can be still and see clearly what it is you’re actually contending with—and discover the courage to be present and move beyond coping to living fully. Hard to do, but I keep trying.

Coyotes have adapted to suburban sprawl, say the wildlife experts here. Nearly all Massachusetts residents now live near them.

My inner coyotes roam at random. Lest they get too cozy, I’ll keep my flashlight handy.

Photo Credit: matt knoth via Compfight cc

Under Construction

Evelyn Herwitz · August 27, 2013 · 4 Comments

For more than a year, I’ve been working on perfecting a pants pattern. The goal is to create a properly fitted master pattern that I can sew in different fabric any time I need a new pair of pants—no more trying them on in stores, which I hate doing because it’s so difficult to find a pair that fits properly, is made of good quality fabric and is affordable.

I do some fitting and sewing, then I stop for months, then I pick up the project again and work on it some more, then put it aside once again. I made one pair of pants from the pattern that didn’t fit quite right, went to a master seamstress for help refitting the pattern, got some more fabric to try it again, cut out all the pieces, then sat on the project for another stretch.

Here’s the reason I keep stopping and starting and dragging this out: My hands can’t sew the way I used to, and I’m afraid of messing up, so I avoid it.

I discovered sewing when I was about five years old. Someone, perhaps my mother, gave my sister and me matching sewing boxes; hers was white with purple trim and mine, white with blue. Each held a packet of needles, spools of different colored thread, a red tomato-shaped pin cushion, some pins and a pair of scissors.

I was in heaven. I began hand-sewing clothes for my Girl Scout Brownie doll, whose name was Shirley, out of old fabric scraps. Her fanciest outfit was an orange corduroy coat with uneven sleeves and a white button. Shirley didn’t seem to mind the amateur workmanship, though I was frustrated that the coat didn’t come out as I’d planned. But I kept on sewing.

As a teen, I learned to sew my own clothes by machine with guidance from a friend’s mother. My first effort was a robin’s-egg-blue jumper with a scoop neck and white braid trim. It had a 22-inch zipper in the back, which I tried to insert unsuccessfully seven times, after which my friend’s mother did it for me. This outfit I wore with a yellow print store-bought blouse at my junior high Girl Scout troop’s fashion show. A few years later, I sewed my senior prom dress out of a black rayon print and inserted a hand-picked zipper.

With practice, a lot of mistakes and some successes, I got better at sewing technique. When Al and I married, I wore a white satin and lace gown that I made myself. I hand-stitched nine yards of lace trim onto white tulle for the veil. When I finished, my fingers were very swollen. A few weeks later, I learned I might have scleroderma.

Though my hands continued to deteriorate, I was determined to keep sewing and made many outfits for my two daughters when they were young. But I have not sewn for myself nearly as much as I would have liked in the years since.

For one thing, I have a lot of fingertip ulcers swathed in cloth bandages, which makes it hard to feel the fabric and manipulate it. Even with a threading tool, I have trouble inserting thread into a needle. Pinning fabric and sewing by hand are very challenging. My hands get tired. I bang my knuckles on the edges of my machine when I’m not paying attention.

But I’m not willing to give up. I have a collection of adaptive tools—an ergonomic rotary cutter to relieve pressure on my wrists, bent-nose tweezers for gripping and pulling, a Y-shaped gadget that I can use instead of my fingers to maneuver fabric through my sewing machine, a 25-year-old Viking Husqvarna that has never failed me. I love paging through sewing magazines and handling fabric. I still design outfits in my head, a favorite pass-time since childhood.

So this Sunday, I pulled out the languishing pants pattern, already cut out of khaki cotton gabardine, sat myself down at the dining room table and began marking the pieces with white chalk to prepare them for construction. The first step involved sewing a fly-front zipper. It was really hard, requiring hand basting through some thick layers.

But I did it. Slowly. When I messed up, I removed the stitches with a seam ripper and did it over. And to my great surprise and pleasure, it came out as close to perfect as I could ever expect, even limited by a pair of hands that don’t always cooperate with my head.

I’ll keep plugging along. Who knows? Maybe this pair will actually fit right. And if not, I’ll just make more adjustments and try again, even if it takes me another year to finish.

Sight

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