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Reflections on the Messy Complexity of Chronicity

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Hearing

“How Is Your Heart?”

Evelyn Herwitz · February 25, 2014 · 4 Comments

Sometimes, a chronic medical condition can save your life.

It is February 15, 1916. My maternal grandfather, Max Kronenberg, age 21, is heading to the Russian Front aboard a train with fellow German soldiers, destination unknown.

Max_Kronenberg_1914He has been assigned to a unit responsible for field communications, stringing telephone lines and monitoring messages between command posts and troops in the trenches. “Who knows whether that’s good or bad,” he writes to his parents, back in Berlin. “I did not make a special effort for it but don’t want to change it either. . . .”

I am sitting in bed late Saturday night, a huge black binder on my lap, reading my mother’s translation of Max’s wartime correspondence. This and other binders of family memorabilia have been collecting dust for more than a decade on the bottom shelf of our bedroom bookcase. 

The collection is just one of those things I’ve always meant to read, but never gotten around to until a few months ago, when I was contacted by faculty of the Technische Universität Berlin who are writing my grandfather’s biography. A professor at the TU until he lost his job when Hitler came to power, my grandfather wrote seminal texts for the field of machining science, a precise engineering specialty. I’ve sent a photo and some family stories to help with the book. Now I’m digging deeper to learn about this man who was responsible for enabling my grandmother and mother to leave Germany in 1936, before it was too late for Jews to escape.

Ten days later, February 25. Max’s train departs from Vietz, carriages and guns decorated with pine branches and flags. He is an artilleryman in the Bavarian Cavalry Division of the 824th Field Artillery Battalion, 10th Army of the German Empire. Food is plentiful, the compartments comfortable—they travel on an express train where each soldier has a bench to himself and two blankets. “Could you obtain two cat pelts for me?” he writes. “They are supposed to be the best prevention for cold feet. Our tailor makes slippers to measure.”

Comforts are fleeting, bravado short-lived. Traveling by train through Poland, then on foot, the battalion marches over many kilometers of deep snow and ice to their position, 8 km from the front. Max’s unit is stationed near Lake Narach, in present-day Belarus.

Food grows scarce. As snow melts, the ground turns to mud. The Russians, prompted by French allies who want to deflect German forces from Verdun, agree to launch an offensive against the Germans in the Lakes region. The Russian artillery bombardment lasts two days, but then they make the mistake of crossing no-man’s land between trenches in groups and are massacred by German machine gunners.

“It was worst on March 18/19,” writes Max. “Today it is rather quiet again. . . . Three days ago . . . one could hear an 18 hour bombardment from there. It should be over soon. In the first place they are getting their heads bloodied, and secondly, it is thawing now and therefore difficulties in transporting grow to undesirable proportions.”

He writes as he tries to dry out his soaking clothes before a smoky oven, after falling hip-deep in a water-filled ditch, en route to setting up new telephone poles: “Could you send me some canned vegetables? The only packages that arrive quickly are those weighing 1 lb. But you make several small packages. One depends on these packages. I don’t manage very well with the rye bread because I am always extremely hungry.” My mother adds a translator’s note: “extremely was crossed out and ‘very’ substituted.”

There is no great love of country or the German cause in these letters. He is a resolute soldier on the wrong side of history, doing his duty. Mostly, Max writes about the daily grind of army life and asks about the packages his mother sends, filled with chocolate, sausages, pies, cigarettes, butter, even raw eggs, that arrive too far apart, often with goodies missing.

In turn, my great grandmother Ella frets about not hearing from him for weeks at a time. His account of his fall into the ditch frightens her when the letter finally arrives. Max’s younger brother, Walter, has also been conscripted and not heard from for weeks. “Nothing much is happening here, it is so terribly quiet at home as you can imagine, the two of you so far, sometimes I feel so wretched and no prospect of peace according to the last speech of the Reich Chancellor,” she writes. “Write immediately and daily you know how I/we wait for news. How is your heart?”

This is the first mention of Max’s heart problem. As the months grow longer and conditions harder, he describes palpitations, although his telephone unit remains a safe distance behind the riflemen’s trenches. Sometime during the spring, he sends a note:

“So that you won’t get a shock when you see battery 824 mentioned in the casualty lists. Our half battery stationed farther south than we are incurred some casualties the other day. One dead and three injured. The guys were in high spirits and were showing off within site of the enemy. An artillery salvo found its target. Too bad about the guy who was killed, he was nice. The others were slightly wounded. So, no reason to fear.”

Long, tedious days are spent cutting trees for log roads to enable troop movements over soggy ground. Every evening, the soldiers hope for letters and packages from home to supplement their meagre rations, share photos of loved ones that arrive in the mail and debate the war’s end. Max receives an occasional newspaper.

“Then comes always the question: Kronenberg, is there nothing about peace in the paper?” he writes in late April. “The smallest phrase is analyzed, debated. Then there are long debates about peace, each one says something whether optimist or pessimist. The most important question is the order in which troops might be discharged.”

On April 28, he writes of a close call. While stringing more telephone wires, Max and a few comrades cross an open field and hear some artillery fire. At first they don’t realize they are the targets, but then “we hear shrapnel balls striking into the field about 50 m in front of us. We used the interval between loading to run to the log cabin approximately 200 m away.”

After an hour’s wait, the men go back to retrieve the roll of wire and attract more enemy fire. “There is a tree shortly before the cabin and I wanted to throw the wire across it—yea—that’s a laugh—an asshole (excuse me) of a Siberian sharpshooter shot at me about 2 m above my head. At that I removed myself. No one is going to hit me.”

Following this episode, which terrifies his parents, Max’s letters become more crisp, annoyed, bitter. He spends long days in the trenches, manning the telephone. He anxiously awaits packages from home. On May 9 he writes, “Today I feel miserable again especially because the lice are plaguing me terribly. If only this thing would come to an end—or that I would be promoted. As a NCO life is better, that’s the deciding point in the matter of promotion. I hope I will get leave soon. My heart isn’t doing too well, either, but it’s useless to go on sick call here.”

A week later, he chides his parents about their concerns: “If you are going to get so upset about 3 errant bullets then I won’t write anything about the war anymore. There’s no point to it! Being here in the East is simply life insurance against Verdun. It’s completely quiet here right now, since our lines are intact and I don’t go past them anymore and reckless I am not. But perhaps I will soon be transferred from the battery. There’s supposed to be a new artillery company being formed and they’re looking for student and graduate engineers from the Institute of Technology. If the battery would let me go, I’d be in fine shape.”

Soon, Max gains permission to apply to the new unit. After three days in the trenches, he returns to quarters and is ecstatic to receive letters and three packages from home, including zweiback, clean underwear, canned goods, hard candy, sugar, peppermint, sausage and a tin of herrings, as well as 20 marks to pay for supplies at the overpriced canteen.

He asks for soap and a copy of Kant’s Critique of Pure Reason to be sent, as well as some math textbooks from home. “Send the books as quickly as possible because when I have telephone watch at night from 12 to 4 I have a lot of time to read. Otherwise I feel pretty well. My heart acts up a bit, quite frequently, especially when I walk a lot, but there is no use going on sick call here.”

In June comes a promotion to Lance Corporal. His application is accepted to the new unit, a Sound Measurement Troop that monitors enemy positions. He longs for socks from home. His new unit is quartered far back from the front. “Today a personal miracle occurred,” he writes sardonically on June 22. “After a rest cure of 4 months in the Russian forests, meadows and fields I took a shower and deloused myself and my ‘rags.’ The bath house and delousing station were donated by a national association of pious maiden ladies from Silesia—I think—as a gift of love (pardon the crude soldier’s joke) . . . .that’s where I discovered what I looked like under all the dirt.”

More trees are felled as Observer Post 3 builds new quarters. Other than mosquitos, Max enjoys his forays into the forests. “The trees are gigantic and give wonderful shade. The birds don’t think about the war and I don’t either. . . . A little brook flanked by tall shade trees gurgles peacefully. Unfortunately the peace is disturbed by the boom boom of the anti aircraft batteries shooting at airplanes. One can’t see them but hears their buzzing. Little white cloud dots of shrapnel mark their path.”

Weeks pass. By the banks of the Svilka, Max celebrates his 22nd birthday with his comrades on July 8 with three bottles of Bordeaux purchased at the canteen and cigarettes. The unit of engineers builds a sturdy cabin for shelter that is the envy of other troops. He takes shifts monitoring sounds of enemy artillery from a booth hidden in the forest. Compared to the trenches, the daily routine is more relaxing. But stress never lifts. “Sometimes one is happy, sometimes one is wrapped in depression,” he writes to his preteen sister, Tutti, “because as nice as it sounds it’s different at home, to be in Germany is something completely different and to be a civilian!”

To his mother, as the summer heat intensifies, he writes: “I can’t exactly aver that I am on summer vacation. I am left with pretty severe rheumatism from the winter and frequently become aware of my heart in this heat. When there is a sudden rain storm, it’s the well know soldier’s complaint: Kidney pains. Now you must not think that I’m a walking corpse. Washed out, yes. But the others aren’t any better off.”

There are 12-hour rotations in the hidden booth, where the soldiers take turns at 4-hour shifts, watching and listening for enemy activity. If anything happens, “the measuring starts.” They nap when action quiets. Each rotation is followed by a 24-hour respite. Then, on August 7, at 11:00 p.m., the unit is roused with shouts. Quickly they pack up and begin a long trek by foot, truck and train to the southwest, by Max’s compass. As they travel across the Russian border into Austria-Hungary, they are passed by an express train headed to Vienna. “Strange sight. Women who look elegant and clean observe this military swarm with curiosity,” Max writes his parents.

Once in Austria, they head east, again, still with no information about their destination, and stop at a town he identifies as S. “We meet train after train with wounded, munitions trains, military personnel trains are back and forth. We await new orders in S. It takes a long time and we help load the many wounded on trains. A terrible picture: Moaning, sighing, wild hallucinations, smell of blood and carbolic acid and in between the trucks bringing more wounded.”

They move on, to be stationed in Galicia. Food is in ample supply. Meat every night, potatoes, vegetables harvested from the gardens left behind by former inhabitants who fled from the invading forces. The unit settles into new quarters—a former pig sty with a straw roof and walls. ”I am fine, just very homesick,” Max writes.

On a late night, 8 km trip on August 29 with a comrade to fetch mail from the army post office, Max gets drenched in a downpour and falls in the puddled streets, soaking through all his clothes. They bring the heavy load of mail and packages back to their new observer post in an oak forest. Rain pours through cracks in the structure. He finds a bottle of cognac in a package from home.

“In two gulps it is half empty! Did that feel good!” he writes. “Huddled in a wet blanket and sitting on the backpack while it continues to pour without pause to accompaniment of infantry fire. Sleep is a figment of one’s imagination. Another swig of cognac! I am curious whether I caught cold. Up to now I just noticed increased heart activity.”

Two weeks later, he is transferred to a field hospital “for heart and nervous disorders.” By winter, he has returned to Berlin, working with factory administration, back where he had been before the war.

Max_KronenbergSo ends my grandfather’s World War I odyssey. Max lost most of his hair during his tour of duty. When my grandparents would visit us as children, my sister and I used to love standing behind him as he sat in a chair and dance our fingers atop his very bald pate. He would pretend we were flies and swat his head with a newspaper, to our delighted giggles. 

But I did not know him well. A modest, remote, serious man, he never shared all that he had experienced in the war or during the years after Hitler came to power. We never discussed what it took for him to leave his homeland, come to the United States and save many family members in the process—though not his parents, who refused to leave Germany and died in Theresienstadt. 

If it weren’t for his heart problems, Max Kronenberg may never have made it back from the Eastern Front and on to become a path-breaking mechanical engineer, who, among other accomplishments, consulted to the U.S. Secretary of War during World War II and the United Nations. If it weren’t for his courageous heart, I would never have existed. May his memory be for a blessing.

Image Notes: The top photo was taken of Max in 1914. I believe he is wearing the uniform of his student fraternity, since he was not conscripted until 1916. The bottom photo is of my grandfather as I remember him. This was taken at a professional conference or an awards ceremony when he was in his 70s, to the best of my recollection. Some of his professional papers are housed in the Smithsonian Institution.

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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: Max Kronenberg, resilience

Milestone

Evelyn Herwitz · November 19, 2013 · 2 Comments

It’s maybe seven years ago, February, midday. The pea-soup-green classroom, a science lab of some sort, is packed with second year medical students. They fill every seat behind the rows of black benches and crowd onto window ledges in the back.

I sit before them on a metal stool, dressed in my favorite red wool pencil skirt, a black and beige tweed jacket, black cashmere sweater and rainbow scarf, stockings, black pumps. I want to look my best, not like a suffering patient with scleroderma.

I have come here, to Boston Medical School, to help would-be physicians learn about this rare and complicated disease, at the request of my rheumatologist’s research fellow. I’ve helped out several years in a row, so I know the drill: The fellow asks questions and I describe my symptoms. Then the students have to figure out which auto-immune disease I’m describing—rheumatoid arthritis, lupus or scleroderma.

I summarize the disease’s onset—fatigue, puffy fingers, fleeting joint pain in my late ‘20s; pleurisy, thickened skin that migrated from my fingers to the backs of my hands halfway up my forearms in my early ‘30s, facial skin tightening that made it uncomfortable to blink, problems swallowing. I tick off more details. Severe Raynaud’s. Calcium deposits, digital ulcers and infections. Friction rubs in my wrists. A miscarriage at 6 weeks. Pre-eclampsia and premature birth of my younger daughter.

The skin tightening, of course, is the giveaway, and several suggest the correct diagnosis of scleroderma—to be specific, limited systemic sclerosis, explains the fellow. Then it’s time for the med students to ask their own questions.

I am always surprised by how tentative they are. I’m one of the first real patients they have met in their medical training, and they stick to the technical details, nothing really personal. Do I get short of breath when I go up stairs? (Sometimes.) What triggers numbness in my hands? (Cold weather, but also a change in relative temperature, like going from 80 degrees outside to 72 degrees inside with air conditioning.) Have I experienced any skin changes on my torso? (No. That’s a sign of diffuse systemic sclerosis, which tends to be much more severe. My skin has actually loosened somewhat with time, thanks to medications, excellent health care and good luck.)

Our session flies by. At the end, I let the students feel the backs of my hands. Their fingers flutter over my skin like butterflies. They are most appreciative. I leave with a sense of accomplishment, that scleroderma will no longer be just another diagnosis to memorize from their textbooks, but something tangible. Maybe, just maybe, after they’ve completed their training, one of these young physicians will be able to diagnose this disease early on and save her patient at least some irreversible harm.

I am also exhausted. There is something about sitting in front of that group, good as it is to teach, that makes me feel like a bug under a microscope. The discussion among the students and the fellow, as they explore my symptoms, is both theoretical and specific. I am reminded of all the scary things that could go wrong—kidney failure, interstitial lung disease, pulmonary hypertension, GI problems, heart issues, on and on.

I understand this discussion—it’s a necessary piece of the students’ medical education. But it depresses and angers me, too. I am not a litany of symptoms and would-be symptoms. I’m a whole woman who has been living with this disease for far too long.

That’s why I dress up. I want to make it clear to the students that I am much more than my scleroderma. Yes, it affects every aspect of my life. But it does not define me.

This is my 100th blog post. Though I haven’t taught second year med students about scleroderma in a long time, I have chosen to share my life with this disease in the blogosphere for some of the same reasons. I want to educate—about not only what it means to live with scleroderma, but also what it means to live with chronic illness.

The more I have written over nearly two years, the more I find myself wanting to share what I’m learning about living fully. We are a society obsessed with categorizing, labeling, one-upping. Health, wealth and beauty guarantee high social status. Those qualities are compromised by chronic disease, especially scleroderma.

The older I get, the longer I beat the odds on this disease, the less I care about those status markers. What I value is my ability to make the most of each God-given day, to nurture loving relationships, to put my talents to good use. And that’s what I’ll be writing about more in the weeks and months ahead.

To all of you who have subscribed to this blog since Post #1 and stayed with me, my profound thanks for your support and continuing enthusiasm. To those who have joined along the way, I’m so glad you’re here.

Photo Credit: A.M. Kuchling 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.

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body image, body-mind balance, calcinosis, finger ulcers, hands, managing chronic disease, Raynaud's, resilience

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.

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.

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Filed Under: Body, Hearing, Mind, Sight, Smell Tagged With: body-mind balance, lung scarring, managing chronic disease

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.

REd_Sox_Washington_cropWould 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.

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.

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: antibiotic resistent bacteria, antibiotics, baseball, managing chronic disease, Red Sox, toe ulcers

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 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.

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, finger ulcers, hands, managing chronic disease, mindfulness, resilience

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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