Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Carpe Diem

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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.

It’s Not Over ’til It’s Over

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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.

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.