Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Step by Step

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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.

Wanderlust

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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.

Waiting for Skylar

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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.

How’re Y’all Doin’?

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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.

33

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We had our first snow of the season on Saturday—a fluffy powder that transformed trees to Battenberg lace. The flakes were too tiny to reveal intricacies as they speckled my brown coat on my walk to and from our synagogue for Shabbat services. By evening, at least four inches covered Al’s car in our drive, and our once-plowed street was white again.

But, no matter. It was our 33rd wedding anniversary, and we would not be deterred from dinner at our favorite restaurant. Snow powdered the night sky as Al carefully drove us along semi-cleared streets. A few other intrepid New Englanders were out and about, as well, and the restaurant was packed when we arrived. We watched the snow blowing beyond the windows as we toasted another year together, a challenging year dominated by my deteriorating hands, but a year that brought us closer.

By the next morning, the sun was high and snow dripped from trees and eaves. We enjoyed a great brunch out, then drove into Boston for a powerful performance of Hold These Truths, a play by Jeanne Sakata, at the Lyric Stage Company. It’s based on the true story of Gordon Hirabayashi, who challenged the internment of fellow Japanese American citizens during World War II. Inspiring and sobering, well worth seeing, especially now.

I was still thinking about the play on Monday as I set out to the hospital at seven o’clock for my HBO therapy. By the time I left, nearly half-past eleven, the temperature was mild, much like that day so long ago when Al and I married.

It was my second marriage, his first. I had sewn my wedding gown, hand stitching nine yards of lace to the tulle veil. The rabbi who introduced us performed the ceremony. We were giddy and full of optimism as we drove to Cape Cod for our honeymoon. One misty night, as we walked Nauset Beach, the sand sparkled with each footstep and the sea froth glowed. It was ghostly, mystical. It gave me chills.

Later, we learned that we had witnessed the natural phenomenon of sea phosphorescence, caused by tiny sea creatures, or, perhaps, some form of sea algae, with their own inner light. But I still think back on that night, when we had no answers and only astonishment, as filled with an eerie, magnificent magic.

About a month later, we learned that I had some form of autoimmune disease. Three years beyond that, I was diagnosed with scleroderma.

I have written before in these posts how a complex, chronic disease becomes the third—unwanted but ultimately accepted—partner in a marriage. Sometimes it fades to the background and can almost be forgotten. Other times, it clears its throat with a rough cough, demanding attention. Then there are times, like this year, when it roars and dominates.

Thirty-three years is a long time to live with an unwelcome guest. Throughout, Al has been by my side, steadfast, the one who hears and sees the worst of it and always reminds me that as long as we have each other, we’ll be okay. The excitement I felt on our wedding day may have all too soon been supplanted by the fear and anguish of a terrifying diagnosis. But love and trust, tended over decades, have proven much stronger than any disease.

Outside our window on Monday night, the streetlamp casts a stark, inky shadow on the snow from the sign Al placed on our front yard a few weeks ago: “Hate Has No Home Here.” He has given more signs to our neighbors, who were pleased to accept them. A few have placed the signs already; he hopes to create a little oasis of radiance on our street. Wednesday evening, at his initiative, we will help serve meals at a homeless shelter nearby.

This is the man who left a trail of sparkles in the sand on a misty night, as a ghostly surf pounded the shore. I had no idea, then, how truly lucky I was.

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.

Image Credit: Luke Hodde