Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Wake-Up Call

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I tried an experiment this morning: Eat a bowl of oatmeal and craisins without doing anything else—no writing, no reading, no New York Times crossword puzzle, no checking email or Facebook or surfing the web on my iPhone, no planning the week’s menus or my work schedule. Just focus on my breakfast.

This proved a challenge. I only partially succeeded. (As soon as I realized I had the lead for this blog post, of course, I had to take a picture of my cereal bowl and tea and the little meditation bowl that a friend gave Al for the holidays). But for a few minutes, I was able to focus, and noticed several things:

  • I love our kitchen. We bought our house in part because of the skylit space over our kitchen table and the view of the rock garden out back. It’s very soothing.
  • I taste more when I’m paying attention to my food. So often I’m thinking of a million other things when I eat that I’m surprised when I’m finished. This was a nice, warming breakfast.
  • There are annoying new floaters in my right eye that have been bugging me for over a week, now—really, sometimes I think I see a bug and it’s a floater.
  • I have to consciously check myself from going off into my head and starting to compose—this blog, a worry-story about what might go wrong today, a trail of images about my long to-do list.

I will try this breakfast meditation again, perhaps not every morning (hard to break the habits of an inveterate multi-tasker), but at least two mornings a week. It’s part of my ongoing effort to be more present in the moment.

My lack of presence was stunningly obvious one evening last week when I was driving home from Boston with a plan to stop at the supermarket. I turned onto the correct street, but then, instead of going to the store, ended up at the gas station right before the store. My tank was three-quarters full. I had no need for gas. But I didn’t realize my error until I started pumping.

I made it to the market afterward and picked up the correct groceries. But I was a bit shaken by how I’d been just too absorbed in too many concerns taking up too much space in my head to go directly there, in the first place. Maybe it’s aging. Maybe I need more sleep. Maybe it’s just one of those silly things that happens sometimes, when you go on automatic pilot without realizing it.

But it’s also the second time in a week that I’ve made a similar error, intending to do an errand at one store and landing at another, nearby, because I was thinking too much about other things and not paying attention to where I was going.

Conclusion: As 2014 arrives, my big goal for the year is to stay more in the present, less in my head, where anxieties—about health, family, finances, safety, what the future might hold—suck up more energy and effort than they are worth, especially since 95 percent of the stuff I conjure up never happens, anyway.

One of the pitfalls of being a storyteller. Better to pour it all into essays or fiction when I’m safely at my computer and not behind the wheel.

For you, dear reader, I hope you avoid your own wrong turns this coming year. May your 2014 bring you inner peace, good health and healing, fulfillment and prosperity, and breakfasts worth savoring

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.

Snapshots

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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 Penn Stationour 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.

Rubin MuseumBut 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.

Chess Players NYCI’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.

Empire State BuildingStanding 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.

Surfacing

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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

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.

Coyotes of the Mind

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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

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.