Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

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.

Pre-exisiting Conditions

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Be forewarned: This is a rant.

Where are the grown-ups in Congress? Can we please go back to the days when people with strong opinions had the maturity to speak to one another and negotiate a compromise?

I had a hard time concentrating on my work this past week, with all the school-yard bullying on Capitol Hill that caused millions of hard-working federal employees to sit idle and worry about their next paychecks, while right-wing conservatives insisted they wouldn’t fund the federal budget unless they could gut the Affordable Care Act.

Then, with Orwellian ease, these same Tea Party Republicans turned around and began to press legislation to fund, piecemeal, all the government programs they realized their constituents valued, after all. Like the National Institute of Health. And help for poor women who can’t afford to feed their children. And blamed it all on the Democrats. Really? How stupid do they think we are?

Whatever your opinion about Obamacare, this is not the way to resolve it. The new law may have flaws that need to be worked out, but it also has already helped millions of children with pre-existing conditions to get health care coverage, something the free market has failed to do. And it promises to help millions of American adults with chronic illnesses like scleroderma to get necessary medical care that they could not otherwise afford. So many people tried to check out the new insurance exchanges this past week that websites across the country couldn’t handle the load. Clearly, demand is real and significant.

But there are so many lies, so much misinformation being perpetrated by a conservative coalition backed in large part by the Koch brothers, billionaire oil magnates whose corporate holdings include Brawny paper towels, Dixie cups and Georgia-Pacific lumber, among other profit centers. This past Sunday’s New York Times explains the months-long machinations that have led to the current standoff.

Even the idol of conservative Republicans, Ronald Regan, knew how to negotiate with House leader and died-in-the-wool liberal Democrat Tip O’Neill. Take a page from the Gipper’s playbook, Tea Party members, and let us get on with the real work of governing. Please.

What disturbs me as much as this hostage-taking political brinksmanship inside the Beltway is the cynical effort by this same conservative coalition to undermine the law’s effectiveness by trying to convince young, healthy Americans, especially college students, not to enroll in Obamacare.

The program’s long-term success depends on everyone, healthy or not, to participate and spread the risk. Where is our good old American compassion? Our sense of community and responsibility for each other? Not to mention the fact that young adults shouldn’t be boondoggled into thinking they can do without healthcare coverage. That is just pure foolishness. An emergency room visit for a broken ankle or dehydration from the flu—the kinds of medical crises that can strike anyone, regardless of age or medical condition—can easily cost several thousand dollars, far more than most young adults can afford. And it’s certainly smarter to get healthcare coverage when you’re young and healthy—otherwise you run the risk of being denied coverage when you get really sick.

It’s that pre-existing condition Catch-22.

Health insurance isn’t the only type of coverage that currently penalizes those of us who struggle with chronic disease. I cannot get affordable long term care insurance, something I may well need in the future. My scleroderma makes the premiums outrageously high. I also cannot add to my life insurance, which I fortunately had the foresight to buy when I was still healthy and in my twenties. But my coverage is modest, what I could afford back then.

I’m sure it will be years, probably decades, before those free market inequities are addressed. Meanwhile, I am praying that Congress and the President are able to work out their differences, get our dedicated federal employees back on the job, avoid the major catastrophe of a default on the nation’s debt payments, and refine the Affordable Care Act as needed without any more childish shenanigans.

I love our system of democracy. The older I get, the more I value the freedoms we enjoy. It’s high time for the principled adults to stand up to the egotistical ideologues, take back Congress and work together to solve the very serious issues we all face as a nation.

Photo Credit: kenteegardin 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.

Barnacles

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Overheard on the Block Island Ferry this past Sunday . . .

Boy, about 10, looking over the railing at sea foam as the ferry pulls out of Old Harbor, heading back to the Rhode Island coast: “Look, there’s barnacles in the water! Do I have barnacles?”

His older brother, maybe 11: “No, you don’t get barnacles unless you’re under the water for a long time, like maybe two weeks.”

Fortunately, the older brother is correct, and the boy has attracted no barnacles of his own. The ferry’s powerful engine hums as we pick up speed and cruise past the island’s cliff-like dunes, dull copper beneath overcast skies.

I lean back against the blue bench along the middle deck, watching the dunes and the North Lighthouse slip past, and contemplate barnacles, those tiny, cream-colored sea creatures that attach themselves to boulders and boats and whales in lacy patterns and feed on plankton within their sharp, crusty shells. No need to move anywhere once they find a home. They just latch on and draw sustenance from whatever drifts their way.

Like worries.

I have a few of my own that I’d like to shed, worries about my health, money, work, family transitions, our aging golden retriever, reactionary politics, the NSA, the Middle East, climate change.

But they’re tenacious, clinging to my subconscious, scraping me when I indulge them, cutting. No easy way to dislodge them and toss them back into the sea.

The ferry cruises now at full speed across open ocean, heading to the mainland. A small red tugboat pulls what appears to be a stranded white yacht. On the horizon, sailboats catch the evening breeze. I relax into the rhythm of the boat rising and falling over light waves. Concerns that have dogged me all day when I should have been enjoying myself magically evaporate into the moist sea air.

I’ve been rereading Melville’s brilliant Moby Dick this summer. As the ferry surges forward, I recall Ishmael’s opening monologue:

Whenever I find myself growing grim about the mouth; whenever it is a damp, drizzly November in my soul; whenever I find myself involuntarily pausing before coffin warehouses, and bringing up the rear of every funeral I meet; and especially whenever my hypos get such an upper hand of me, that it requires strong moral principle to prevent me from deliberately stepping into the street, and methodically knocking people’s hats off—then I account it high time to get to the sea as soon as I can.

A flock of cormorants fly in formation, skimming the water. The setting sun burnishes blue-black waves to a salmon-pink patina.

From saltwater we came. Perhaps that is why the sea is so soothing. Sail on, sail on, swift enough to evade the barnacle’s pincers, slow enough to cast angst adrift. At least ’til landfall.

Photo Credit: shoothead 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.

Sister Act

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“Remember, with the slurs, keep the notes nice and light. Let’s pick up at measure 69.”

The conductor taps his baton on the black music stand, and the St. Louis Wind Symphony breaks into John Williams’s Midway March, with the flute section playing brightly above the lush harmonies. This is the group’s first of only two rehearsals before next Sunday’s concert, a week from today. All are experienced musicians. My older sister plays piccolo and flute, first chair.

3320572325_f56c081618It’s been decades since I’ve heard her perform. During this two-hour afternoon session, the group is spot-rehearsing summer show-stoppers like the Candide overture, a Gershwin medley, The Magic of Andrew Lloyd Webber, Big Band Bash. It’s up to each musician to practice and learn or review whatever needs polishing before next Sunday. My sister makes the syncopated piccolo riffs in Bernstein’s Candide sound easy.

Today is the last of my three day visit, my first trip out here in seven years. Far too long. But something always seemed to get in the way of travel—tight budgets, busy schedules, the fact that she made a number of trips east while our father was ailing from Parkinson’s, the fact that flying by myself is exhausting. We’ve kept in touch by occasional phone calls, Facebook and email. Weeks, months, years, have slipped by.

So many years that when I checked my bag at the Delta counter at Logan last Thursday afrernoon, I was shocked that I had to pay $25 for the privilege. “We’ve been doing that for years,” snapped the ticket agent. Well, sorry, I didn’t know—and, by the way, if you didn’t charge so much per bag, maybe there would actually be room in the overhead compartments for everyone’s carry-on luggage. But I digress.

I’d love to carry on my bag. But I can’t lift it overhead or pull it down, and I don’t want to have to ask for help all the time. Getting through security with just my small shoulder bag was exhausting, enough—pulling out my boarding passes, juggling my photo ID, removing and replacing my laptop, taking off my coat, shoes.

Other than being squished like a sardine in my window seat and partially losing my hearing in my right ear due to shifting air pressure on the descent into St. Louis (it cleared by the next morning), the trip was blessedly uneventful. It was a relief to see my sister waving at the edge of the security barrier when I arrived.

Over the past few days, we’ve gone shoe shopping (she helped me find a great pair of Naot sandals that are both elegant and comfortable for my difficult-to-fit feet), walked through the stunning Missouri Botanical Garden in 90-plus heat and humidity, attended the St. Louis Fringe Festival, had lunch with friends I haven’t seen in decades, played Scrabble (no chance of winning against my sister, who has become a Scrabble online maven) and watched a hilarious performance of Spamalot at the outdoor Muny Opera. I’ve shared my new weather spotting fascination with my brother-in-law, had wonderful conversations about favorite writers with my younger niece and enjoyed our joint interpretation of what Tarot cards have to say about my business prospects (trust your intuition).

But sitting in on the Wind Symphony practice is the highlight. Music was a big part of our childhood. My sister was always the lead flutist in our school orchestras and bands. I played first violin and was concert mistress as a high school senior. I also played alto, bass and contrabass clarinet in our wind ensemble. It’s been nearly 35 years since I’ve been part, albeit vicariously, of a band rehearsal.

As the musicians wander into the music department practice room at Missouri U-St. Louis, I try to guess what instruments they play from the shape of the cases slung over their backs and shoulders. No more of those heavy black fiberglass cases that I remembered from high school—everything is lightweight, durable mesh fabric.

Watching one of the clarinetists assemble his instrument, plucking black and silver sections from their blue-velvet lining, I’m surprised as my throat clutches and eyes tear. I miss this. I miss the tangy smell of oiled wood and the bitter-sweet taste of reed on my tongue. I miss being able to make music myself. I can’t play clarinet anymore, because I can’t tighten my lips around the mouthpiece or manage the keys. It’s been decades since I could play my violin—an impossibility with my damaged hands. Octave spreads on the piano are beyond me, now.

So, instead, I write on my laptop as I listen. Composing sentences, capturing rhythms in words, is my music making. I sway to Gershwin and big band hits as I type, stopping to focus on my sister’s flute solos. I enjoy the stop-and-start practice to refine phrasing, the conductor’s bop-a-dah-be-dah-ba-dat-dat explanations of how the music should sound, the group’s wonderful sight reading, the great arrangements, my sister’s fluid notes.

Monday morning, she will drive me to the airport. But the music will linger, long after. And I won’t let another seven years drift past before I return.

Photo Credit: dongga BS 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.