Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

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.

Weather Spotting

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Hot. Cold. Hot. Cold. Hot. Cold. Hot.

‘Tis the season for unsettled weather, which always seems to be the case in New England. As the saying goes, if you don’t like the weather here, wait a few minutes.

My neighbors walk their dogs and tend their lawns in shorts, tee-shirts and flip-flops, but I’m still doing my thing with more layers than I’d like—long pants, a sweater or sweatshirt over a lighter top, my indispensable wrist warmers, socks and shoes.

I took the bold step of bringing my winter sweaters to the dry cleaners only last week, but missed them a few days later when we were deluged with cold rains that triggered my Raynaud’s and caused a messy leak in our basement. Why, I wondered, couldn’t the rain have fallen over Colorado’s burning Black Forest, where it was really needed?

Of course, you can’t control the weather any more than you can control a chronic disease with a mind of its own. The only thing you can control is the way you respond.

Managing my health takes much vigilance, many doctor’s appointments, good nutrition, regular exercise, taking all of my meds every day, tending my finger ulcers to ward off infection, getting as much of a good night’s sleep as I can, recognizing and managing stress triggers, appreciating love from family and friends, common sense, pro-active problem-solving and doing my best to stay positive. That’s the short list.

Dealing with the weather is a different beast. It’s not just about following forecasts so I know how to dress and keep warm. It’s also about trying to understand and not get overwhelmed by the strange shifts and extreme weather patterns we’re all experiencing. Fatal floods in Europe, record-breaking forest fires in the Rockies, the Oklahoma City tornado, last fall’s Superstorm Sandy—not a week goes by when there isn’t another extreme weather event somewhere around the globe. Lately I’ve been looking at the sky and feeling like it doesn’t make sense any more.

Mark Twain (or perhaps one of his contemporaries) famously said, “Everyone talks about the weather, but nobody does anything about it.” Well, I decided last week to do a little something. A bit of a weather geek to begin with, I drove an hour-and-a-half to Manchester, N.H., one evening to attend a three hour training as a National Weather Service (NWS) volunteer weather spotter.

Weather spotters fill in the observations that radar can’t pick up closer to the ground—like the size of hail or the siting of a funnel cloud, where there’s flooding or whether winds are strong enough to topple healthy trees. I can now explain how tornadoes form, what kinds of thunderstorms are the most dangerous and their warning signs. I have an official weather spotter ID and the number to call for our NWS bureau in Taunton, Mass., to report on signs of serve weather.

It’s my own small way of responding to climate change. If I can help to fill in the blanks about approaching storms, then maybe I’ll enable someone to get out of harm’s path.

It also gives me some sense of control, albeit illusory. At least I have a better understanding of what clouds signify and why hail falls and when to run to the basement.

In a perfect world, we wouldn’t have to worry about any of this—tornadoes that drop out of the sky and destroy elementary schools or diseases that appear out of nowhere and ravage our bodies. But the world is far from perfect. It just is. All we can control is our own response. This is mine.

Photo Credit: Nicholas_T 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.

Road Trip

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Hello, I love you, won’t you tell me your name?
Hello, I love you, let me jump in your game.

Taconic ParkwayI’m singing with Jim Morrison’s husky baritone, cruising west on the Mass Pike. It’s Sunday of Memorial Day weekend, drizzling, then raining, then sunny with patches of azure flashing behind wooly clouds, then pouring again, as I head toward the Hudson Valley to help Emily move home from college for a couple of weeks before she leaves for her summer internship.

Driving long distance is a meditation for me. As long as traffic isn’t onerous, I can focus on the present moment of the road before me while allowing the back of my mind to wander. Often, the answer to a problem I’m trying to solve will pop out of nowhere. During the dozen years that I used to commute 100 miles round-trip to Boston daily, I would do some of my best thinking during rush hour traffic jams.

But today, I’m just enjoying the classic rock road trip medley playing on my satellite radio and trying to keep my joints from locking up. I didn’t sleep well the night before, so singing words to old favorites is the best way to stay alert, and bopping to the beat helps me shift my weight so my back and hips don’t get sore.

If I ever get out of here…if I ever get out of here.

Wings will never rival the Beatles, but I still like McCartney. Most of the traffic, heavier than usual for a Sunday, drifts off the Pike at the exit to Interstate 84, heading, no doubt, for New York City and environs. Not yet few enough cars and trucks to set the cruise control, but easier from this point west.

Now that I don’t have to drive daily into Boston, I enjoy the road more. But commuting forced me to be a better driver. I had always been intimidated by heavy highway traffic, especially in and around a major cities, until about 17 years ago, when I agreed to participate in a study for new medication to treat Raynaud’s at Boston Medical Center. I had to drive into Boston once a month for a check-up as part of the study and realized the commute was not only doable, but I reveled in the sense of independence it gave me and the discovery that the city was more accessible than I’d thought. That led to the decision to seek a better-paying salary in Boston and twelve-and-a-half years as a marketing director in higher education. I had some hairy trips in bad traffic and nasty weather, but I never had an accident.

Working for myself now, I don’t miss the commute one bit. But on a day like today, I enjoy the feel of the road, the lush green landscape, the ever-changing sky. I just wish I weren’t quite as tired. Time to make a rest stop and stretch my legs.

Layla, you’ve got me on my knees.
Layla, I’m begging, darling please.
Layla, darling won’t you ease my worried mi-i-i-i-i-i-i-nd. . . . .

Thank you, Eric Clapton. Thank you Duane Allman. Thank you, Derek and the Dominos. No better song for driving, ever. More sun than rain, now, as I cross the New York border and head down the Taconic State Parkway.

I grew up farther south, along the Hudson, and there is something about the rolling landscape, the view of majestic blue Adirondacks on the horizon, the Dutch and Indian names for creeks and towns that feels comforting, familiar. I set my cruise control close to the 55 mph speed limit, sit back and glide up and down the hills. The Taconic is notorious for speed traps and deer. I will be glad to get out of the car soon.

Does anyone really know what time it is?
Does anyone really care about t-i-i-i-m-e?

Belting it out with Chicago, I finally reach the quaint Hudson River town near Emily’s college. Just a few more miles to go. The sun is out, it’s cool and windy. Rainbow pinwheels spin in a bakery’s front yard. The farm stand near the college is open for the season. I have figured out the structure for this week’s blog post.

I park behind the row of dorms near a few other parents, their cars crammed with luggage and boxes. Em arrives, smiling, with her bike and a few other items that we need to fit into my Prius. She’s already packed everything else into her sister’s Elantra that she’s borrowed for the year while Mindi is living in Tel Aviv.

The wind feels refreshing, now. It’s so good to stretch. We visit with a friend, drop off Em’s keys to the dorm that she’s overseen as a peer counselor (otherwise known as an RA) for the year, and go out for a late lunch at the local diner. The fish burger, sweet potato fries and tea revive my brain, a good thing. We have a three hour drive home, with me in the lead.

I switch from classic rock to jazz. Is it really possible that Em has just completed her junior year of college? Is it really possible that summer is almost here?

As we cross the Massachusetts border, the bottom arc of a huge rainbow bends from massive, scudding clouds to the Berkshires, below. I call Em, following several car lengths behind, on my cell. “Welcome back,” I say. “That rainbow is just for you.”

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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.

In the Belly of the Beast

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There’s no such thing as a non-invasive test. Some are just more invasive than others.

Last week I found myself inside a clanging, banging, buzzing, bleeping MRI machine, undergoing a 25-minute diagnostic that was probably unnecessary, one of those just-in-case procedures you occasionally have to endure because one of your specialists needs to validate a hypothesis and define a baseline.

I’d had an MRI once before, at Boston Medical, lying on my back with a pair of headphones, listening to Ray Charles. The procedure was longer, but the music was good enough to distract me from the machine’s clanging, so the time passed relatively quickly.

Not so last week at an outpatient facility near home. First of all, the position was uncomfortable. I had to lie on my stomach, head in a padded masseuse-like cushion, arms forward, another pad pressed against my abdomen, ankles draped over some kind of wedge, like a swimmer frozen in a dead man’s float. Secondly, the music was lousy—a choice between two stations I dislike (pop rock versus easy listening) on headphones with poor reception. So equipped, unable to see around me, with an IV in my arm and a rubber squeeze ball to grasp in case of emergency, I slid backwards into the MRI’s gullet.

Buzzing soon commenced. Through the headphones, I could hear the tech’s voice alerting me that this first scan would take five minutes. BEEEEP. BANG-BANG-BANG-BANG. I could barely hear the music because of all the static in the headphones, let alone all that banging and clanging, and the song wasn’t anything I really wanted to listen to in the first place, but I hung onto the notes so as not to start feeling claustrophobic.

CLANG-CLANG-CLANG-CLANG. The music ended and the announcer started jabbering, followed by a lot of commercials that sounded like gibberish. I tried to figure out how many more of the five minutes were left by counting the number of ads. Finally, a moment of silence inside the machine.

BUZZ-BUZZ-BUZZ-BUZZ-BUZZ. Another series of scans. I did my best to keep breathing without moving anything I wasn’t supposed to move. This was not easy, especially with the pad compressing my diaphragm. I practiced Pilates breathing, expanding the sides of my rib cage. I wondered if either of the techs had ever gone through this procedure. I decided this should be part of every MRI tech’s training.

The tech’s voice in my headphones informed me that she was now going to insert the contrast dye through the IV. I might feel a cool tingling, but if I took a few deep breaths, the sensation would pass. BEEEEEEEEEEP. BANG-BANG-BANG-BANG. Somewhere in the background, I could hear Billy Joel’s “Just the Way You Are.”

I tried to monitor the progression of the slightly cool dye through my veins. I have an allergy to certain contrast dyes, but I had been assured this was very safe. BUZZ-BUZZ-BUZZ-BUZZ-BUZZ. So far, so good. I tried to focus on the barely audible lyrics as the machine moved through a series of five scans, grateful for the brief silences between each cacophonous set.

More commercials. Next up, “I’m Never Gonna Dance Again.” Yuck. The voice in the headphones said this was going to be the last set, a two minute scan. Thank goodness. BLEEP-BLEEP-BLEEP-BLEEP-BLEEP.

All of a sudden, I felt flushed and unable to get a full breath. I tried to calm myself, but my breathing was too shallow. I squeezed the rubber ball several times. The tech and her assistant were both in my headphones, slightly annoyed. This was the final scan, just two minutes left, what was wrong? “I feel like I’m going to faint,” I said, twice. The machine stopped. A door opened. I moved forward. Someone took my hand, probably the assistant. The tech reassured me it couldn’t be a reaction to the dye, I’d had it seven minutes ago and been fine, it was like aspirin, it would just pass through my system. The weird sensation lifted, and I was able to breathe fully again. Back into the belly of the monster.

BLEEP-BLEEP-BLEEP-BLEEP-BLEEP-BLEEP-BLEEP. Not a procedure for anyone with a propensity for migraines. I told myself it would be over soon and marveled at how anyone in their right mind could think all these decibels should be tolerated for the sake of more medical data points.

At last, blessed peace. The awful radio music ended, too. I could feel myself moving out into the open air of the room. As the tech removed the IV catheter, she noticed my bandaged fingers.

“Are you a nail biter?”

“No, I have scleroderma.”

“Oh.” Silence. She had no clue what I was talking about.

I sat up, slowly, feeling groggy. The assistant brought me a bottle of apple juice. I took a few sips and wondered aloud why the machine was so noisy. The tech explained that it had to do with the various levels of magnetic resonance. Then she added, “A man made it. That’s why it doesn’t work right.”

I was still a little woozy getting dressed, but relieved to slip my wedding ring back in place. Fresh air felt wonderful. I took another sip of juice as I relaxed into my car seat, Symphony Hall playing on my satellite radio, then realized I’d forgotten to ask when the test results would be available. But I didn’t really care. I’d hear soon enough.

Down the street was a car wash. No one was in line. As my Prius drifted gently into the dark, automated cavern, I lay back, listening to Brahms, drinking my juice, and watched the clear, fine spray wash the last traces of late winter’s grime from my windshield.

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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.