Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Taste

Snow Day

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On Sunday we had our first big snow of the season, 15.5 inches, officially. Thankfully, the power stayed on despite the heavy, wet snow, although the pole that holds our bird feeder snapped under the weight. Al shoveled our drive and walkway three times, more than earning a good night’s sleep. I clomped through deep snow in our backyard to rescue the feeder and hang it by the back deck, so the birds could still find some food in the storm. Inside, our home stayed warm and cozy, as the world around us slowed down.

I always love this kind of snow, early in winter, before it turns grubby and sloppy and monotonous. The transformation is stunning. Snow outlines lacy tree branches, drags down evergreen boughs, and covers roofs like thick layers of buttercream frosting. Side roads stay white, even after plowing, with high borders lining both sides. Only a few cars venture out, and no planes drone overhead. Quiet reigns.

On Monday afternoon, I bundled up in a long sweater under my down coat, snow boots, wool hat, warm mittens, and sunglasses, and set out to see how the neighborhood had changed.

School was canceled to give the city time to clean up after the weekend storm, but I only saw one dad pulling two of his kids on a red plastic sled, while the other two walked alongside. One of the kids on the sled, his cheeks bright pink, licked a huge ball of snow. I used to love that wintry treat, too, when I his age. Also making snowmen, but so far, none to be seen.

Elsewhere, a few neighbors were shoveling their drives or brushing off cars. Most folks had, like Al, done the main clearing on Sunday. You could tell who had snow blowers by the wide paths along sidewalks that were already melted down to pavement. An icicle shattered on someone’s front steps. Dollops of snow, like whipped cream, clung to branches. Snow covered half of a neighbor’s roof, while the other half had melted to reveal an array of black solar panels.

Aside from enjoying the scenery, the best part of my walk was savoring the moist air that eased my winter-indoors-too-dry nose and eyes, and the fact that it was warm enough to walk with my mittened hands outside my pockets for the whole mile-and-a-quarter route. The air smelled fresh and clean. My head was much clearer when I got home. As I wrote this post, I could hear a red-tailed hawk calling somewhere nearby.

All of this will wash away by mid-week, in another storm, but rain this time. So, here’s to living in the present moment and enjoying all the beauty that surrounds us, each day. You only have to look to find it.

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.

Through Rain and Gloom

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It’s another one of those weeks when I have a cluster of medical appointments. And they involve a lot of driving. Monday dawned with a deluge of rain, which made the prospect of driving into Boston yesterday morning all the more delightful. Wednesday, the next double appointment day, will at least be sunny.

Both ways yesterday, the driving was intense. Visibility in the worst of the Nor’easter downpour (at least without snow, thank goodness) was about ten car-lengths. And, of course, there were some geniuses on the Mass Pike who chose to ignore all the electronic signs that observed that “wipers on means headlights on” and oh, by the way, this is the law.

The one big blessing in all this was that traffic was not nearly as heavy as usual, perhaps because people are taking off for the holidays ahead of time, or because they were smart enough to stay home. Despite all the rain, I was able to make the drive in a little over an hour, even driving below the speed limit.

I could have canceled and stayed home. But appointments are hard to come by, there’s never a convenient time, and I didn’t want to wait another few months to reschedule.

Most importantly, it was good to have my dental check-up and learn that my teeth have not resorbed more. It was also good to see my wonderful cardiologist, who gave me an A+ on my ECG and said my Type II pulmonary hypertension seems to be well-c0ntrolled with my current medication. There’s no cure for it, but I’m holding steady. And I need to exercise more. I know, I know. I will try to do better.

I was tired when I got home, but I made it safely and got the reassurances I needed that all is well, all things considered. Worth driving in a deluge.

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.

Image: Jessica Knowlden

Baltic Souvenir

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Last Wednesday, at midnight, Al and I returned from a two-and-a-half week trip to the Baltic states of Lithuania, Latvia and Estonia. I’m still processing all that we saw and heard and learned. It was a powerful journey that exceeded all our expectations. I planned a complex itinerary: fly to Helsinki, Finland, stay a couple of nights to recover from jet lag, then fly to Vilnius, explore for five days, go on to Riga for four days, then to Tallinn for another four days, catch the ferry back to Helsinki, and fly home the next day. And that is what we did.

We promised ourselves, in making this trip, to honor the memories of family who had perished in the Holocaust. Al was especially committed to commemorating his maternal grandmother’s brother, Avram Itzek, whom he believes was his namesake, and who chose not to leave his home town about an hour from Vilnius, in what is now Belarus, because it was where he felt he belonged. He was killed in the Holocaust. I hoped to uncover traces of my maternal grandfather’s Berlin cousins, who were deported to Riga in 1941 and perished there, though details of their fates are not known. We also hoped to learn more about the vibrant Jewish communities that once flourished in these countries and about what it meant to break free of the Soviet Union three decades ago—a historic moment made all the more poignant and relevant in light of the war in Ukraine.

Geopolitics made it impossible to visit Avram Itzek’s home town of Ashmyany—the day we landed in Helsinki, our embassy in Minsk told all Americans to leave Belarus because activity there by the Wagner Group, which has supported Russia’s invasion of Ukraine, made it too dangerous. The day we landed in Vilnius, Wagner leader Yevgeny Prigozhin’s plane fell out of the sky, undoubtedly retribution by Putin for his short-lived revolt against the Russian military back in June.

So, even a trip to the border for a glimpse in Ashmyany’s direction was out of the question. But as Al read more of the family history he’d brought along, he realized that before his grandmother’s family moved to Ashmyany, they had lived in the small village of Dieveniškes, located in the far southeast corner of Lithuania. With help from a friend, we traveled there on our last day in the country and found the Jewish cemetery where Al’s ancestors were laid to rest.

In Riga, we took a Jewish heritage tour with a private guide, and at the Museum of the Riga Ghetto and Holocaust in Latvia stood a long Wall of Remembrance with thousands of names. On the wall for Jews deported from Berlin in 1941, I found the name of my maternal grandfather’s first cousin, though not her husband, young son, or mother, who had all come with her. The Museum’s executive director, who sat with me to take all the family information that I had about these lost relatives, gave me a much needed hug and promised to research archives to find out what became of them all.

Not everything on our travels was heavy. A few fun facts: People in this part of the world are TALL. I thought it was my imagination, or a stereotype, but it’s true. In fact, in our Air BnB flat in Riga, I at first wondered why the closet hooks and hanger rod were up so high—then I realized, for tall people it was just right, especially because their longer clothes need more room to hang. Also, although ice hockey is the national sport of Latvia, both Latvians and Lithuanians are crazy about basketball. That, and chess. Everywhere we went, we saw chessboards, in libraries, in courtyards, in parks. And, everywhere we went, the food was outstanding.

The Old Town in Tallinn was the most beautiful of the three we stayed in, one of the best preserved medieval towns in Europe, still with its walls in tact. Much work is ongoing to preserve and restore buildings, many of which, here as in Riga and Vilnius, were destroyed in wars. One of the buildings in Old Town is painted a sugary pink. It is surrounded by metal crowd-control fencing, which is covered with posters protesting the war in Ukraine, as well as occupied lands in Georgia. This is the Russian Embassy in Estonia.

Throughout our travels, we saw Ukrainian flags flying in solidarity, Ukrainian blue and gold everywhere—from the Town Hall in Vilnius on our first night, illuminated as a rippling blue and gold flag on the eve of Ukraine’s Day of Independence anniversary, to an exhibit of new Ukrainian medals for bravery in battle at a museum of knighthood in Tallinn. These Baltic states, all about thirty years old as independent democracies, understand what it means to be conquered by Russia. Stories, of exile to Siberia under Stalin, of authoritarian rule, of always being under surveillance by the KGB, have not faded. And history is tragically repeating in neighboring Ukraine.

Whenever I travel abroad, to countries with much longer histories than these United States, I am reminded that world dominance ebbs and flows like the oceans that separate our continents. Authoritarian forces threaten democracies around the world and here at home. If history is any guide, we cannot take our own democracy’s survival for granted. I came home convinced, more than ever, that we must do all we can, especially this year, to preserve and protect free and independent, inclusive elections, so that the fate of our nation rests in the hands of the many, not of the few who would remake it in their own image.

So, that is what I’ve been thinking about as we traveled through the Baltics, and what I continue to wrestle with now that we’re back home. It was a journey that will stay with us for the rest of our lives. Here are just a few images from our trip . . .

 

Helsinki, Finland

In and Around Vilnius, Lithuania

In and Around Riga, Latvia

Tallinn, Estonia

Ferry to Helsinki

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.

And She Persisted

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It is really hard to be patient. Especially now, when we’re so accustomed to getting immediate answers at the click of a keystroke. Especially when it comes to ambiguous health issues with no ready solution in sight.

But I have a different context for this observation, as I write on a rainy Monday morning. Please bear with me.

I have been working on a novel since fall 2014. Set in World War I, it’s about a widow whose estranged daughter runs off with her beau to volunteer for the French medical service, and the mother’s journey to find her and bring her home. You can read more about it here. For the past year-and-a-half, I’ve been looking for a literary agent who will help me get published. It’s a very long slog.

I’ve gotten some bites and requests for parts or all of the manuscript, only to have the agent reject it (“I didn’t fall in love”) or in one case, ghost me for the better part of a year after promising to read it. I’ve worked on the language and plot some more, completing the eleventh draft this spring. I feel confident it is my best work. But the book publishing world is highly competitive, and it is very hard for a debut author to get her toe in the door, let alone a whole foot.

It takes a ton of patience. And confidence. And a really thick hide. Earlier today, I spoke with a published author of multiple novels who was kind enough to read the manuscript for me and give me some feedback. It’s taken the better part of a year for us to connect. Worth the wait, because he was very encouraging, told me no need for any more revisions, just focus on getting it published. He had some good suggestions that confirmed my strategy going forward and also gave me a few other helpful tips. Most of all, he likened the process to starting a small business, which resonated for me, having wrestled through that experience years ago to launch my marketing consultancy. “A year-and-a-half is nothing,” he added.

It’s all about managing expectations, which is true of most challenging problems. American culture places a premium on speed, youth, and instant gratification—none of which has much value for solving a really difficult issue. Getting my novel published will take more time and research, many more queries, and a resolve to keep going even in the face of multiple rejections.

Managing an elusive disease with no known cure, like scleroderma, takes a lifetime of learning to manage symptoms, find the right medical team, build partnerships with health care professionals, practice a healthful lifestyle, get help for depression and other mental health challenges that arise in the course of such complexity, and find ways to live fully with the disease. For starters.

It takes a mother-lode of patience. For you, Dear Reader, that is what I wish on this rainy Monday morning.

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.

Image: Nathan Dumlao

Up in the Air

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I’m traveling again on my own, sitting at Logan airport, waiting to board my flight to Philadelphia. So far, so good, but as much as I try to anticipate how to make the journey easier on my hands, there are always surprises.

One thing I did right: I knew the flight was full, and my seat is in the back. Chances of getting overhead storage for my carry-on was slim. So I volunteered to check my bag when the inevitable announcement came. Saved $30 and spared my hands and back. There’s an Apple Air Tag in my bag, in case it gets lost in transit.

One thing I should have realized in advance: Getting though the entrance to security requires showing your ID, which I had ready, but my driver’s license is in a wallet with a window. Nope, needs to be handed to the security staff, because they run it through a card reader. I fumbled and fumbled to remove it. Fortunately, no impatient person was in the very short line behind me. But I needed the TSA guy to take it out for me, just couldn’t do it myself. Ugh.

Something I wish I could manage better: Lifting my luggage into the TSA bins, taking out my computer, taking off shoes, et al is always the hardest part of air travel for me. (“Do you happen to be 75 or older?” asked the TSA guy politely, regarding the shoes. Apparently when you reach that magic age, you are no longer suspect for having dangerous items concealed in your footware. “No,” I asserted. He apologized for asking. Ugh.) At least security wasn’t crowded, so I didn’t feel as rushed as usual.

Another thing I did right, sort of: With a lot of time to kill, I got a bagel and cream cheese and some tea at a Starbucks in the terminal. Of course, this meant that I had to spread the cream cheese myself. It came in a foil packet with a nick at one end and directions to “tear here.” Unless you have strong fingertips, these things never work. I had packed a pair of manicure scissors for just such a challenge. But I put them in my backpack, instead of my purse. So, lots of digging around before I could pull them out and use them. Next time, I need to remember that I can put them in my purse—no issue with tiny scissors going through the TSA scan (especially since it raised no issue when my backpack passed inspection—duh).

A useful trick that I learned from my trip to Germany: To protect my thumbs, which are always bandaged because of ulcers that never heal, I wrap the bandages with a second layer using Coban. This is an elastic fabric that comes in rolls and sticks to itself. One of my medical team recommended it as a way to cushion my thumbs and protect them more. It works pretty well, and serves also as a second layer to keep my bandages from getting dirty from travel.

A necessary precaution: I’m wearing a mask in the airport and on the flight. Enough coughs and sneezes in the vicinity, and I don’t want to get sick or make others sick when I arrive.

I wish flying were simpler and enjoyable. It isn’t.

Even still, I am always amazed that a huge steel tube with wings, filled with tons of people and luggage, can rise into the air and carry us to distant places. The view of clouds and patchwork landscape and cities from above never fails to fascinate. For all the drawbacks of air travel in the 21st century, it’s still a wonder. . . .

And I made it to Philly without a hitch.

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.