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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Hearing

Lacrimoso

Evelyn Herwitz · May 29, 2018 · 10 Comments

My grandfather’s violin is 108 years old. I learned to play it when I was in grammar school, and it has accompanied me everywhere I’ve lived for more than fifty years. This week, I am donating it to our public school system. Here’s why:

It was the summer between third and fourth grade when I first placed a violin under my chin. Our community was blessed with a robust summer music program. You could pick any instrument, borrowed from the school district, take lessons and play in a music ensemble. To the best of my knowledge, my parents only paid for private lessons. The rest was covered by local tax revenues. A long, long time ago.

I was among the shortest kids in my grade, and the violin I borrowed was a half-size. It was a hot summer, and I practiced those first scratchy notes in our unfinished basement, trying not to knock over my rickety collapsible music stand onto the concrete floor, playing for my father’s drill press, tool bench and table saw. Supposedly this was a way to stay cool, but I suspect my mother also didn’t want to listen to my novice efforts. It was creepy down there and not conducive to developing a love of the instrument, but I was an obedient kid and stuck with it. Plus, my older sister had already learned to play the flute, and I was not about to let her outdo me.

Persistence (and a dollop of sibling rivalry) paid off. By the time I had grown enough to manage a full-size violin, my father gave me his father’s instrument. Inside was a small, yellowed label that recorded its creation by one Samuelis Henricus Scheib in Nashville, Tennessee, on February 11, 1910. I played many pieces on that violin, auditions, solos, in chamber groups, All County Orchestra, and as first chair in our school orchestras as I got older.

For my sixth grade graduation, I played a solo accompanied by my teacher, Mr. Errante, on the piano, Meditation from Thaïs by Massenet. Near the end of the piece, there is a pause following a high harmonic, played pianissimo. The audience of parents, faculty and students broke into enthusiastic applause, and I can still see Mr. Errante beaming at me from his seat at the baby grand. I started laughing, but I managed to get through the final phrase, to a second rousing round of appreciation.

There were other memorable performances on my grandfather’s violin, including the first movement of Vivaldi’s Concerto for Two Violins and Strings in A Minor, played with my friend and orchestra seat-mate, Judy Parker, one summer with our student orchestra. I loved the bowing on that piece, a real workout.

Eventually, when I became concert mistress for our high school orchestra, Mr. Errante let me borrow the best violin that the school owned, and I set my grandfather’s violin aside. The tone was so far superior to what I had been able to produce on the family heirloom that I didn’t want to play it anymore. My senior year, I worked my way up to Mendelssohn’s Violin Concerto in E Minor. And that is as far as I got.

One of the reasons I chose the University of Rochester for undergraduate studies was my dream of taking violin lessons at the Eastman School of Music. But I never followed through. I played my grandfather’s violin in a chamber group on the River Campus a few times during my first semester, then set it aside. There were many complicated reasons why, including a romantic involvement with a guy who disdained the humanities as a waste of time—one of my great regrets. But I lacked self-confidence and was far too easily swayed by his strong opinions.

Even though I wasn’t playing it anymore, however, my grandfather’s violin travelled with me, a vestige of my former identity as a talented musician, a promise that I could always pick it up again. From Rochester to Pittsburgh to Springfield, Illinois, to Worcester, Massachusetts, it has moved with all the other trappings of my life and rested in its blue-velvet-lined case under my bed.

Over decades of neglect, the tuning pegs loosened, the bridge fell and the sound peg rolled around inside. When Al and I got engaged, he had it repaired as a gift. That was the last time I tried to play. Soon after, scleroderma claimed my fingers, and it was too late.

Still, I’ve held onto it, along with my favorite sheet music, for decades. It was just too hard to let it go—until Al recently made a decision to have his father’s viola, another family heirloom, repaired, for donation to the public schools through our local NPR affiliate. We’ve been listening to their PSAs for years, promoting the idea of giving unplayed instruments to the school system for students who can’t afford their own and want to learn. Nothing like a good role model.

Even still, I was hesitating to follow his lead, until one day about a week ago, when I woke up and looked at my post-surgery fingers and decided the time had come. We had it tuned with a set of student strings and the bow re-haired. When Al brought it home last week, I gently plucked the strings and held it under my chin one last time. Then I set it back in its case and said good-bye.

What’s the point of holding onto an instrument that makes no music? I have no more delusions that I will ever play the violin again. It’s time for my grandfather’s violin to find a new home. I hope it goes to a student who would otherwise never have had the chance to learn. And I hope whoever sets it beneath her chin will take good care of it, and pass it on when it’s time.

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. Please view Privacy Policy here.

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Filed Under: Body, Hearing, Mind, Touch Tagged With: hands, managing chronic disease, mindfulness, resilience

Step by Step

Evelyn Herwitz · March 27, 2018 · Leave a Comment

I’ve been walking a lot in recent days. Monday afternoon, the sun was bright and the air crisp as I took my half-hour afternoon walk around the neighborhood for the first time in weeks, after all the Nor’easters of late. Everyone seemed to be enjoying the sunshine. Neighbors chatted as their leashed dogs waited patiently. Couples strolled. A little boy pushed his scooter down an empty, dead-end street. Clumps of snow seeped silently into the ground.

On Saturday, I did more walking—about six miles. With a group of teens and adults from our synagogue, Al and I hiked to City Hall for the local March for Our Lives. After a rally of inspiring student speeches, several thousand of us walked down Main Street in support of common sense gun control, from City Hall to the old Court House, the line stretching for blocks. Al and I peeled off as the march circled back to City Hall, stopping off at the Art Museum for a break and then walking home.

I wasn’t sure if I could do it all. My feet are easily tired, and by the time we were on our way back, my knees and hips were protesting. But some ibuprofin and a nap helped. By Sunday morning, my body was mostly back to normal.

I’m lucky. My biggest worry when I go out for a walk is how well my feet and joints will hold up. Not so for too many children in our nation who have to worry about getting shot as they walk through their neighborhoods to school.

When I was in elementary school, we had air raid drills to practice what to do in case of a nuclear attack. The idea sounds ludicrous now. Once, when I was in the fifth grade, we took the hands of first graders and walked with the rest of the school to a nearby public building that housed a community fallout shelter. We all thought it was a fun excuse to get out of our classroom.

The lockdown drills to practice for an active shooter, so common for today’s school children, are deadly serious. We may not all agree on what needs to be done to end the scourge of gun violence in our nation. But we can at least agree that this is a public health crisis that demands everyone’s involvement in finding a solution. One step, one march, one vote at a time.

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: foot pain, managing chronic disease, resilience

Wanderlust

Evelyn Herwitz · March 20, 2018 · Leave a Comment

So . . . we ended up with two feet of snow from Skylar last week, and now we’re expecting another five to ten inches from the next Nor’easter, Toby, on Wednesday night into Thursday morning. (Who comes up with these names, anyway?) Fortunately, we’ve had some melting in-between.

But I’m really getting tired of this weather pattern. And I’m starting to yearn for our next travel adventure to somewhere beautiful and warm in the summer. Which brings me to the topic of traveling with scleroderma, or any other disabling disease, for that matter.

Travel is strenuous when you’re healthy. All the more so, when you have to deal with all the possible complexities of this disease. But I’m determined to keep visiting new parts of the world (new to me) and discovering other cultures and viewpoints, as long as I’m able, one way or another. The benefits of always learning and growing far outweigh the fatigue factor. So I’ve gathered a few travel resources that address some of the biggest issues for those of us living with some form of disability, below.

Many of the resources out there focus on wheelchair accessibility. Some also address the broader issues of traveling with a disability that is less visible—and therefore more readily dismissed by people who should know better. I’ve selected a range, here, to help you get started on your own travel adventure:

Lonely Planet Accessible Travel Online Resource: This free PDF includes a wealth of information, from a huge list of online resources to tips for traveling with access issues. Lonely Planet guides are a favorite of mine, and the fact that they make this one a free download is a big plus.

Rick Steves’ Tips for Travelers with Disabilities: You may know Rick Steves from his PBS travel program. This blog post list basic, common-sense tips for planning ahead, especially if you need a wheelchair accessible hotel room or wonder how to find accessible bathrooms in a foreign country.

Society for Accessible Travel & Hospitality (SATH): Founded in 1976, SATH offers travel resources, information for travel agents, plus travel tips and access information for people living with a wide range of disabilities.

Travelling with Scleroderma: This PDF download from Scleroderma Australia provides a great summary of how to travel with oxygen if your lungs are compromised.

Disabled Traveler/ SmarterTravel: Another useful blogpost with a roundup of online resources.

“What We Get Right About Accessible Travel” from CNTraveler: From my favorite travel podcast, here’s an episode featuring Alysia Kezerian, founder of the Instagram account Wheelies Around the World, and Traveler contributor Julia Buckley, author of Heal Me: In Search of a Cure. Both women travel extensively; both have disabilities. Kezerian has relied on a wheelchair since a spinal cord injury in her twenties, and Buckley lives with a rare disease that causes joint dislocation. Well worth a listen, for practical advice and a lot of inspiration.

Happy trails!

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: anxiety, managing chronic disease, resilience, travel, vacation

Waiting for Skylar

Evelyn Herwitz · March 13, 2018 · Leave a Comment

Once again, for the third time in two weeks, we await a major Nor’easter here in New England. This one’s name is Skylar, and it promises to dump at least 8 more inches on Central Massachusetts today, more on Boston. In the meantime, at least half of the 16-plus inches we got last Wednesday has melted. And by the weekend, it’s supposed to hit the 50s, thank goodness!

In preparation, I ran around for a couple of hours on Monday to complete errands before the storm. And did a lot of waiting. First, I had to wait a half hour to see my ENT, a follow-up visit after he had removed my ear tubes last month, post HBO therapy, to be sure everything had healed. Indeed, my eardrums are back to normal, which he confirmed in a five minute check-up. We commiserated about the approaching weather (his home had just regained power from the last storm) and I went on my way.

Next stop was Home Depot for a quick errand. I had to wander around to find someone who could direct me to the right aisle, but at least I had picked the proper section of the superstore and was able to get out of there in about 15 minutes.

Then I headed to the bank to make a deposit. Plenty of cars in the parking lot and another wait in line, as everyone else seemed to be on a mission ahead of bad weather. (Yes, I’m one of those people who do not trust taking a picture of my check on my smartphone and sending it electronically to the bank—not interested in expanding my digital footprint in that way.) The teller and I wished each other a safe day on Tuesday.

On to CVS to pick up some prescriptions. The clerk had trouble finding the second order, finally located it, then noted that our insurance hadn’t covered it. This required some follow-up (we’ve had a recent change in our insurance) and everything was straightened out, after more waiting. And waiting for the updated receipt to be checked into their system. All of this took about a half hour.

Finally, my last stop: blood work at the clinic near our home. I have to have a liver function test done monthly for one of my medications. I’ve been on this drug for many years and never (thank goodness) had a negative test. It seems like a huge waste of time and money. Even my rheumatologist thinks it’s ridiculous. But it’s required. Fortunately, I got right in. The phlebotomist wondered aloud if they would have to come in during the storm. “You’d be amazed how upset people get if their doctor’s appointment is cancelled,” she said, “even if it’s not safe to drive.”

Over the course of my two hours of running around, the sky changed from blue with bright sunshine amidst puffy white clouds to silvery gray. You can feel it in the air that snow is coming. Mother Nature has a way of forcing us to hurry up in order to slow down. Just enough time to take care of my to-dos before Skylar’s arrival. Then I’ll hunker down and simply watch the flakes fall.

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, managing chronic disease, resilience

How’re Y’all Doin’?

Evelyn Herwitz · February 6, 2018 · 2 Comments

Punxsutawney Phil may have seen his shadow last week, predicting six more weeks of winter (of course, technically, there are always about six more weeks of winter after Ground Hog Day). But Al and I took a break from freezing cold at home and headed south Wednesday night, landing in New Orleans for a long weekend. On Thursday, we were walking around without coats. Even when the weather dipped into the mid-50s, it was still welcome, compared to Massachusetts.

I’d been imagining this trip for several years as I worked on the first draft of my novel. Now that I’m starting revisions, I need to know more about my protagonist, who immigrates from France to New Orleans as a child in the 1870s. So the plan was to mix research and fun, to escape winter’s frigid clutches and celebrate my healed hands. And celebrate, we did.

NOLA is known for its incredible cuisine and did not disappoint. The jazz was great, the art provocative, the neighborhoods intriguing. Most people we met were welcoming and went out of their way to be helpful. Strangers looked us in the eyes and greeted us with a friendly “How’re y’all doin’?” as they passed us by. We caught Mardi Gras beads flung from parade floats (celebrations fill the month leading up to Fat Tuesday), noodled around stores and art galleries, walked and walked and walked. Our Lyft drivers told us about life in their home town and their experiences during and recovering from Katrina. On Sunday morning before we left, we strolled along the banks of the mighty Mississippi in Crescent Park and watched a sky blue freighter steam slowly past.

My research included an immersion in selected materials at the Historic New Orleans Collection, a walk through the Hebrew Rest Cemetery, a look at the city’s oldest hospital, rambles through the Garden District and Faubourg Marigny neighborhood to photograph the many and varied styles of housing. I thought about light and heat and immigrants and masks.

Saturday evening, we discovered a vintage costume shop, filled with bling. As Al shopped for the loudest tie he could find for Purim (a Jewish holiday with its own carnival vibe), I scanned the racks and discovered a beautiful beaded overblouse. I tried it on. Lovely. But when would I ever wear it? I left it on the rack, and we went to dinner across the street.

Good as the meal was—outstanding Middle Eastern food—I wondered. Why not? If the store was still open when we finished, I said to Al, I’d like to go back. As we walked up to the door, the owner and her clerks were about to lock up. But she welcomed me inside. “You need to make your own festivities,” she said as she wrapped the overblouse in white tissue paper and placed it in a purple plastic bag.

Even with the freezing temperatures here, I’m glad to be home. We packed a week’s worth of touring into three-and-a-half days, I was fighting a cold, and I’m tired. But it was well worth every minute. My hands held up. No infections. Many sights and ideas to mull. Make your own festivities, indeed.

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: finger ulcers, hands, how to stay warm, managing chronic disease, mindfulness, resilience, travel, vacation

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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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