Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

Sister Act

· · 3 Comments

“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.

Spilled Coins

· · Leave a Comment

Quarter past ten. Why does it always take almost as much time to drive 50 miles from my home into Boston as it does to maneuver through local traffic and park for my rheumatology appointment?

I’ve driven round and round the garage, finally located a space on the sixth level. Heading toward the stairs, I notice the elevator has just arrived and decide to shave a few minutes. For some reason, I have it in my head that I’m late, when I’m actually, amazingly, early for a change.

A curly haired woman in capris steps into the elevator ahead of me. As the doors begin to close, another woman with a rolling briefcase runs, calling for us to wait. The first woman reaches her forearm to hold the door. “I’m not very good at this,” she apologizes. “But you did it!” says the third passenger.

When the curly haired woman steps toward the back of the elevator to make room, I notice her hands. They are frozen into fists, with scabs from ulcers on the back of each knuckle. Her face is smooth and tight, lips pulled into a grin. She carries her paper coffee cup in a pink rubbery sleeve with two handles that she can hook with each hand.

As familiar as I am with scleroderma, I’m startled. I don’t often meet a fellow traveller. I feel badly for her. Her hands seem so much worse than mine. I wonder if I should say something. But casually commenting, “So, I see you have scleroderma, too,” feels awkward. There’s no hiding this disease. We all want our privacy.

We both walk quickly across the street and into the medical center. She pauses to study the floor directory. I signal the elevator and am the first one in, this time. We exit at the same floor, with me a few steps ahead. We sign in for our appointments simultaneously. I overhear her saying that she is seeing the same rheumatologist. Her appointment is the one before mine.

As I open my wallet, a dozen coins spill onto the carpeting. Great. This is the price of leaving the coin compartment unzipped to save my fingers. The curly haired woman is the first on her knees to help me. She scoops up some quarters and dimes with her fists and places them on the counter before I can flip a few into my palm. “I often find using a piece of paper helps,” she says. I thank her, marveling at her speed.

We sit on opposite sides of the waiting room. She scrolls on her pink-encased smart phone. I type on my laptop. Our doctor is running late, as usual. I think how grateful I am that I can still type. I notice how adept she is at maneuvering objects with her two fists. I keep track of her turn, since mine will be next. She disappears into the warren of exam rooms.

When I finally see my doctor, an hour later than scheduled, we go over all my latest symptoms and difficulties. My ulcers have been particularly troublesome for the past few weeks, due, no doubt, to the odd extreme temperature changes of late. It’s frustrating, I tell him. They’re sore all the time. But, I add, there was this woman in the waiting room who had the appointment before me. Her hands were so much worse. What do I have to complain about?

It’s only a few days later, when I recall her comment about how a sheet of paper helps her to scoop up coins, that I realize she may well have thought the same of me and all my bandages.

This is a jarring disease. It disfigures and contorts the body. But it doesn’t straightjacket creativity, so essential for coping. My curly-haired counterpart has figured out how to scoop up coins with her fists. I have found the lightest touch keyboard so I can still write with my bandaged fingers. I wouldn’t trade my frustrating but familiar problems for hers, and I expect she would say the same of me. Maybe we’ll talk about it, next time our appointments coincide.

Photo Credit: uhuru1701 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.

Take Me Out to the Ball Game

· · 4 Comments

Some people have a knack for winning raffles. Al is one. So when he told me a few weeks ago that he’d won a raffle at work for two Red Sox tickets, I wasn’t really surprised, but I was glad to go. I enjoy a good game of baseball, and I hadn’t been to Fenway Park in far too long.

Fenway_5-8-13Our tickets were for last Wednesday night, Red Sox versus the Minnesota Twins. Tuesday, I checked the forecast: rain, maybe even a thunderstorm. I started fretting. I had spiked yet another infection over the weekend in an ulcer in my left thumb. What if it got too cold and damp for me to sit outside?

Al checked the location of our tickets, and our luck held—we were in the grandstand, under the second deck. Okay, game on! Even if rain caused a delay, I’d have my layers. I put two coats to choose from in the back of the car, brought along my gloves and leg warmers, just in case, and we set out for Boston.

Despite a downpour on the Mass Pike, heavy traffic and a search for ridiculously expensive parking, we made it with about 10 minutes to spare before game time. The sky had lifted, and everyone was in a good mood as we walked past the food and souvenir barkers, through security (a sign of the times, especially after recent events in Boston), and into the ball park.

Our seats, way in the back of the grandstand, were high and dry, and we had a great view along the first base line. Call me corny, but there’s something about that first glimpse of the ballpark—the emerald green outfield, neatly trimmed in a criss-cross plaid; the perfectly groomed clay-red infield; the players in their bright uniforms, warming up; the good-old red neon Coca Cola sign; the inevitable baseball trivia opening award ceremony (it was the 40th anniversary of the American League’s designated hitter rule)—that just made me grin and get a little lump in my throat.

We were both smiling by the end of the first inning. After the Sox pitcher gave up far too many walks, loading the bases for the Twins and enabling them to drive in four runs, our boys redeemed themselves in the bottom half with a run and a grand slam that put us up by one.

But it was all downhill from there. The Twins scored seven more runs in the second inning, and we never caught up. Final score, 15-8, a total rout.

Al was not pleased. But I didn’t really care that much, even though I would have preferred a better contest. I was having too much fun watching the people show—the guys in yellow vee-neck tees and ball caps, climbing up and down the stadium, carrying trays on their heads loaded with nuts, lemonade, hot dogs, water bottles and chowda-chowda-he’ah; the spectators bopping to the music, laughing at themselves on the big screen, trying to start a wave around the stadium, cheering as the ball flew high into the night sky and sighing as it was caught only a few feet from the Green Monster; the between-innings standing ovation for a dozen Rhode Island state troopers in their dress olive green uniforms and Smokey hats, honored for their help after the Marathon bombing; the seventh inning stretch, singing along with the crowd and organ to Take Me Out to the Ball Game.

No one around us got too drunk. People were chatting and texting and just relaxing, despite the lousy game. We had plenty of room and were able to move down to the front section as discouraged fans left early. People danced and pumped their fists to the team’s informal theme song, Neil Diamond’s Sweet Caroline.

Even in the bottom of the ninth, when we were so far behind, die-hard fans (maybe a quarter of the stadium, at this point) were still chanting a sing-song let’s-go-RED-Sox! It started sprinkling just as the game was ending, and the deluge and lightening held off until we were well on our way home.

Hope springs eternal at Fenway. Despite the fact that we lost, despite the threat of rain and my lousy infection, despite the fact that if Al hadn’t won the tickets we wouldn’t have been able to afford to go, despite doping scandals and the commercialization of professional sports and outrageous players’ salaries, there is just something so sweet about a Wednesday night baseball game at an old fashioned ball park that makes everything seem possible again. So good, so good, so good.

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.

Going for a Walk

· · 4 Comments

This past Sunday, on a blue-sky spring day, my husband joined more than 300 people whose lives or loved ones have been affected by scleroderma, on a three mile walk to raise awareness and funds for a cure. Sponsored by the New England chapter of the Scleroderma Foundation, this was one of hundreds of walks around the country that are organized each year in communities large and small, providing an important revenue stream for medical research grants.

Paul Klee, "Cat and Bird," 1928, at MoMA
Paul Klee, “Cat and Bird,” 1928, at MoMA

There is, as yet, no known cure for scleroderma, and both the Scleroderma Foundation here in Massachusetts and the Scleroderma Research Foundation in California depend on armies of volunteers nationwide, through events like awareness walks, to help garner support for their fundraising efforts. Each foundation distributes about a million dollars annually for promising research—grants needed more than ever during this time of sequesters and congressional gridlock over federal spending.

Al is much better than I am at this kind of event. I’m always uncomfortable asking for donations. My forte is raising awareness through words. Al, however, is a great fundraiser. Last week he sent out an email to family and friends asking for sponsors, and by Sunday he had collected more than $200. A record number of participants joined the walk, and I was proud of him for being one of them.

While Al was striding for a cure Sunday afternoon, I was trekking through the crowded corridors of Penn Station, on my way to a two-day business meeting. We wrapped up early on Monday afternoon, giving me just enough time for my own private scleroderma pilgrimage. I set out into the crisp spring sunshine, pulling my rolling suitcase down Manhattan sidewalks, through subway stations, across 5th Avenue, along 53rd Street to the Museum of Modern Art, to finally see, in person, the works of Paul Klee.

Paul Klee, "Letter Ghost," 1937
Paul Klee, “Letter Ghost,” 1937

A member of the German Expressionist Blaue Reiter Group a century ago, a distinguished faculty member of the Bauhaus school of art in the 1920’s, Klee created a lyrical mix of abstract forms and hieroglyphics, a “visual vocabulary” inspired by music, nature and poetry in his intricate drawings and paintings. Luminous, whimsical, haunting, his art is a journey into dreamscapes. He once described the act of drawing as “a line going for a walk.” But when the Nazis rose to power, they targeted Klee’s work as degenerate art, and in 1935, he was exiled from Germany to his native Switzerland.

Isolated from his intellectual circle of artists, who included his close friend Wassily Kandinsky, alone with only his wife for emotional support, stonewalled in his efforts to regain his Swiss citizenship, Klee became ill. A strange rash and long bout with pneumonia left him severely weakened. Other symptoms eventually surfaced. The skin on his face began to tighten. He developed difficulties swallowing and digesting. In a meticulously researched account, Paul Klee and His Illness, physician-author Hans Suter deconstructs Klee’s health struggles and concludes that the artist was suffering from diffuse systemic sclerosis.

Miraculously, Klee’s hands were not affected by the disease, and he was determined to continue drawing and painting. Despite fatigue, painfully tightened skin and ongoing problems with his digestion, lungs and heart, he created thousands of works in the five years he battled scleroderma and suffered through the treatments of the day—including, according to Suter, an infusion of olive oil and turpentine, believed to be a beneficial stimulant that would shock the immune system back to normalcy.

Paul Klee, "Intoxication," 1939, at MoMA
Paul Klee, “Intoxication,” 1939, at MoMA

Nothing worked. Klee was focused and courageous in the face of his disease, but he also eventually came to understand and accept that he was dying. His later works are full of dark lines, wistful angels, pain and loneliness, infused with irony and deep, rich color. He died in 1940, at 50 years old, a few days before the local canton government finally took up his citizenship application.

Medical research has come a long way since Paul Klee’s battle with scleroderma. No one believes in olive oil and turpentine infusions anymore, thank goodness. But we still have many steps to walk before a cure is found. As I stood before Klee’s subtly complex paintings, marveling at his detail and textures and many-hued washes, I wondered what more beauty he might have created, had he had the benefit of today’s medicine. I hoped to be as courageous in my own art. And I thought how wonderful it would have been to have walked together.

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.

The Random Factor

· · 2 Comments

Every morning, once I’ve worked the kinks out of my joints, made the bed and done some stretching, I wash my hands and sit down with manicure scissors, clippers, nail file, tweezers, ointment, bandages, wound dressing and moisturizer to tend my fingers. I pick and nip any shreds of dead skin, clip nails that have split or splintered at the corners, file away rough skin patches and inspect for signs of inflammation. Then I treat and bandage any open ulcers and slather on moisturizer, rubbing and wringing my hands over and over until the skin no longer feels sticky.

This is how I try to protect myself from the world—all the inevitable bumps, bangs, cuts and bruises, as well as all the nasty germs that could invade my body through cracks in my skin, inflicting pain and havoc.

It takes time, this daily ritual, sometimes five minutes, sometimes a half-hour, depending on what I did with my hands the day before, how well they have healed in moisturizer and white cotton gloves overnight, and the random factor.

In statistics, random factor analysis is used to determine whether an unusual observation—a data outlier—is caused by random events or some underlying trend.

Each morning, as I clip and nip, I perform my own informal random factor analysis: Did I get this ding when I banged my finger on the kitchen chair? Is this soreness on my pinky from tapping too often on my iPhone? Does this nail-bed inflammation stem from forgetting to wash my hands when I got home after running errands and using the germ-covered keypad at CVS without my gloves? (All random events.) Or is the increased number of recent ulcers due to the extremely cold and fluctuating temperatures these past few weeks? (An underlying trend.)

Trends, such as weather patterns, are a bit easier to cope with, once identified. I just need to dress with greater attention to the forecast. More layers. Don’t mothball the down coat or sweaters quite yet. Keep those scarves and wrist-warmers handy.

Random events are the most challenging because, by definition, they’re random. I have no idea that I misjudged the distance between my finger and the back of the kitchen chair as I reach to pick my wallet off the table until I feel the pain. I can’t anticipate an ulcer on my iPhone pinky when for months the finger has been fine and I haven’t changed my frequency of tapping and texting. I don’t always get an infection every time I use a check-out keypad bare-handed, though I’m beginning to douse my hands in antibacterial hand cleaner as soon as I get back in my car, just to be safe.

You could say that I’m constantly adjusting and adapting my protective behavior as I continue to gather more data points.

But random is as random does. You just can’t anticipate all the bad stuff you’re going to run into every day. Or, to be fair, all the good stuff, either.

So my morning ritual is as much a meditation on my state of being as it is a random factor analysis. Here is where my fingers are today. This is how the rough patch of skin feels before and after I file it down. That is an incipient hangnail in need of trimming before it gets worse. Here is how much dead skin I can cut away to sense more through my thumb. That ulcer still needs a bandage. This one looks like it could go without, finally.

Rub, wring, rub, wring. The moisturizer absorbs into my pores, a silky, invisible film to keep my skin flexible and ready for whatever the day may bring. This is how I try to protect myself. This is how I face the world each morning.

Photo Credit: topher76 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.