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Reflections on the Messy Complexity of Chronicity

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Baltic Souvenir

Evelyn Herwitz · September 12, 2023 · 6 Comments

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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: resilience, travel, vacation

And She Persisted

Evelyn Herwitz · July 11, 2023 · Leave a Comment

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

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, managing chronic disease, mindfulness, resilience

On a Lighter Note

Evelyn Herwitz · June 20, 2023 · 4 Comments

I am back home since last Tuesday evening, our daughter is on the mend in Philly, thank goodness, and I’m nearly caught up with work, writing, volunteer activities, and keeping up with everything else that I need to keep up with. So, it was definitely time to do something fun this weekend. Al is skilled at finding hidden gems that are not far away, and for Father’s Day, he suggested we visit Forest Park in Springfield, Mass., one of the nation’s largest municipal parks, built in the late 19th century. I’m a fan of park design from that era, so we were were good to go.

I added to the mix another suggestion: a visit to Springfield’s The Amazing World of Dr. Seuss Museum, which commemorates the life and whimsy of Theodor Geisel, aka Dr. Seuss, one of Springfield’s most celebrated citizens. And that turned up another fun fact: Springfield has four other wonderful museums in the same lovely location, and admission to one is admission to all. So we added in a visit to the Michele and Donald D’Amour Museum of Fine Arts.

The best part of the Dr. Seuss Museum was having Al read to me, in his inimitable way, two books that neither of us had ever read before: There’s a Wocket in My Pocket! (1974), replete with delightful made-up rhyming words about a surprising cast of creatures hiding in a little boy’s house, and I Had Trouble in Getting to Solla Sollew (1965), an odyssey of mishaps that pokes fun at the idea that anything in life is free of troubles. Too true.

My favorite painting at the D’Amour Museum was a powerful acrylic on paper, Disappearing Forest 1, by Marlene Yu, all the more meaningful, given the Canadian wildfires. Then there were roses in Forest Park and the mysterious sphynxes guarding the dramatic mausoleum to Everett Barney, who donated much of the land for the park.

As always, I hope you enjoy my photos from our day. And watch out for those Wosets in your closets. . . . They’re actually rather charming.

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: Hearing, Mind, Sight, Smell Tagged With: body-mind balance, mindfulness, resilience, travel

Things Get More Complicated

Evelyn Herwitz · June 13, 2023 · Leave a Comment

As I write on Sunday afternoon, I am once again back in Philadelphia—where it has been mostly, but not always sunny, due to wildfire haze from Canada. Our younger daughter is on the mend, but not without a major complication last week, after we drove back to Massachusetts, which made all too clear the weaknesses in our nation’s health care system.

Last Tuesday morning, when my daughter got up, she noticed that the right side of her jaw was more swollen than it had been when we saw Dr. B Jr the day before. We assumed it was just part of the natural healing process, post surgery, as we’d been told that there is often more discomfort several days out from the procedure. I had not slept well that night, anticipating the six-hour drive ahead, but had eked out just enough rest to go. She really wanted to get back home. So, we left.

A good mix of ’70s road trip music buoyed our spirits, and we took several breaks along the way for me to eat and her to drink the protein shakes I’d made in advance and transported in a cooler. We arrived safely but exhausted, around 7:30 that evening. By this time, her jaw looked more swollen, but it was too late and we were both too tired to get to urgent care to have it evaluated. Our working hypothesis was that the steri-strips over her incision were inflaming her skin.

The next morning, she called Dr. B Jr, who would have seen her if we were still in Philly, but advised her to restart antibiotics, and if there was no improvement, to get back to Philly on Thursday for an exam. He also said to go ahead and remove the steri-strips and the superficial suture in her neck, as he’d explained at our Monday visit.

We both slept well. By Wednesday evening, she was rested and in good spirits as we were having supper together, when, all of a sudden, I noticed what I thought was a loose scab at the end of her incision. Within seconds, it morphed into a gushing stream of putrid brown goo pouring from her neck. I tried to help her stanch the flow, but there was no stopping it, even with a towel pressed to her neck. With Al giving directions, I raced her to the ER, which fortunately  took only 10 minutes.

Because she was triaged as having a neck injury, she got a bed right away and priority attention. But here is where the downside of American health care comes into play. It turns out that there is no oral surgeon on staff at our hospital, nor at the other major trauma center in our city. Nor is there any oral surgeon at any of the hospitals in the greater Boston area, with the exception of Tufts in Boston, which has a dental teaching program. Because our hospital could only treat immediate symptoms but not fully evaluate her, the plan was to drain as much as possible from the infected abscess in her neck, infuse her with strong antibiotics, do a CT scan to determine how far the abscess had traveled internally, and then transport her by ambulance to Tufts, if they would accept her.

All of this seemed extreme to me. Why would she need to be transported an hour away and admitted to Tufts for this episode? Why couldn’t we just stabilize her that night and then drive back to Philly the next day, to continue care by her surgeons? The ER docs explained that if anything went wrong on the drive, and we thought the doctors had said it was okay, then there would be a problem (e.g., they could be sued for malpractice, though that wasn’t explicitly stated).

I was also worried about her insurance, because she was out-of-network for her coverage. While we waited for her to come back from the CT scan, I asked if they had any idea how much this was already costing. On top of the ER visit, an ambulance transfer to Boston plus a second hospital intake, plus a potential hospital admission and maybe a procedure would have easily run into high five or even six figures, with no way to know how much she would be billed after the fact. Of course, if she was at great risk, we would have done whatever was needed. But was it really necessary? The person who handled billing said that they had run her insurance through their system, but because she was out-of-network, they couldn’t see what the insurance would cover. “They’ll pick and choose,” was all she could say. Not reassuring.

Around midnight, the CT scan results came back. Her neck was mostly clear, though there was some slight residual of the abscess. Her second IV drip needed to finish, and the ER team needed to assess options. As we waited, I noticed that her face was turning pinkish red. She was getting vancomycin, a powerful antibiotic which can cause a rash (a detail I’d learned years ago when I was constantly getting digital ulcer infections that required IVs), so I asked her nurse to check her. Sure enough, the IV pump rate was too fast, so she slowed it down with the doc’s input. Would anyone have noticed, I wondered, if I hadn’t been by her side?

By about 2:00 a.m., her ER doc came back to visit. They had contacted Tufts, but given that our daughter’s case was not deemed life threatening (thank goodness, but again, then why the extreme plan?), they would not admit her because of her out-of-state insurance. The ER doc had also consulted with the covering oral surgeon in Philly, who agreed that my original suggestion to drive her back later in the day made perfect sense. To her credit, the doc kept our daughter in her ER room for observation until shift change at 7:00 a.m. and sent Al and me back home to sleep.

I got about three hours after working off the adrenaline rush by doing some laundry and cleaning up the kitchen. Al picked her up on time from the hospital, and our daughter called Dr. B Sr to fill him in. He agreed that she was safe to travel and had no concerns about the plan. Since he’d already given her his cell number, he said we could contact him anytime on the way back to Philly, and he would check in that afternoon. Such a mensch. We felt very reassured, and after I rested a bit more, we set out around 2:00 p.m.

Now, of course, there is another layer of complication to this saga: When I tried to help stanch the flow of putrid pus from our daughter’s neck Wednesday night, I did not think to put on rubber gloves, and soiled the bandages on my thumbs. During the long wait at the ER, I went back home to change my bandages and start minocycline, which I always have on hand. If things got worse, I figured I could call my new ID specialist (my long-time specialist retired last year), whom I had fortunately met recently.

A few hours into the drive, my left thumb, which has a very persistent ulcer, began to buzz. Not a good sign. Just past the halfway point, as we got onto the Garden State Parkway in New Jersey, it was starting to smart. I could tell it was swelling, I was at risk for a lot of pain with a spreading infection, and it was now past 5:00 p.m. My daughter was feeling well enough to take the wheel, and I called my ID specialist’s office. Thank goodness, he was on call that evening. Over the next couple of hours, with the help of his excellent answering service, I was able to get through to him, get a prescription for a broader spectrum antibiotic, and figure out that it could be filled at the CVS near my daughter’s apartment, which would be open until 9:00 p.m. Our ETA was 8:15 p.m.

We made it. Because my Medex insurance is from Massachusetts, the prescription was not covered, but the wonderful pharmacist found a coupon to bring the out-of-pocket expense down from $75 to $22. Our daughter’s kind neighbors helped us lug all our stuff up to her apartment, and she found a good parking space. We slept soundly.

The next day, we met with Dr. B Sr and Dr. N. They reviewed all the notes and CD with part of the CT scan from the ER visit, talked at length with us, and determined that she needed a combination of antibiotics to fight back what was left of the infection. Her two jaw plates were in tact, with no sign of infection around all nine screws holding them in place (infections can dissolve bone, causing the screws to loosen, requiring more surgery). More follow-up was scheduled for Monday morning. And they knew all about the shortage of oral surgeons in our region, because there is a shortage of oral surgeons nationwide, though a concentration in the Delaware Valley, where one of the major training programs is based. She had both of their cell numbers and was encouraged to call anytime she needed help.

And so, on Sunday evening, she is doing better, thank God. The swelling has significantly receded. Dr. B Sr immediately responded to a few issues over the weekend. My plan, if all is clear after her Monday appointment, is to take the train from Philly back home on Tuesday.

But we are left with many questions: Why is our health care system so disjointed? Why should our daughter be rejected from a hospital because she lacks in-state insurance? Why is the obvious treatment plan initially rejected because physicians are more concerned about malpractice suits that what actually makes sense? Why isn’t there a better way to distribute medical specialties nationwide? Why should an antibiotic that would cost a few dollars in Massachusetts cost $75 across state lines?

Quality health care should be a right, not dependent on income or privilege or geographic location. None of this is new. But it really hit home for me this past week. I am exceedingly grateful for all the good care that our daughter has received. It just shouldn’t be this hard or confusing to get 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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: finger ulcers, managing chronic disease, medical emergency, resilience, U.S. health care system

Greening

Evelyn Herwitz · May 9, 2023 · Leave a Comment

At long last, it finally feels like spring here in Central Massachusetts. Over the weekend, the sun came out, the temperature climbed to 70°F, and all the trees that had been waiting for the signal unfurled their leaves.

We are once again surrounded by green. And so, Al and I went for a hike on Sunday. He took me to a beautiful forested park with trails around a cascading stream. I hope these photos give you the aahhh sensation I felt while hiking. Enjoy!

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, Sight, Smell, Touch Tagged With: body-mind balance, exercise, managing chronic disease, mindfulness, resilience

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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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