Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

First Snow

· · Leave a Comment

Immersed in whiteness, once again. Our first snow of the season began Sunday night, and by Monday morning, our world was transformed by billions of fluffy flakes, cloaking secrets beneath a foot’s accumulation. More snow is on the way as I write, looking out my bay window onto yews, their evergreen branches bowed by the weight of last night’s visitation.

The house is warm. Al saved himself a gym workout by shoveling the drive, and the roads are plowed. I rescheduled Tuesday appointments in Boston to avoid an anticipated messy commute as the storm lingers along the coast. I ate oatmeal for breakfast, and there’s last night’s soup for lunch.

Snow forces the world to slow down. Arriving as it did during the Thanksgiving weekend, I know many folks were not thrilled. Our younger daughter was wise enough to return to Philadelphia on Saturday to avoid what became a nightmare of travel woes as the storm approached the Northeast. Across the country, travel conditions were abysmal.

Still, here in my own little world, I’m grateful for the change of pace. We live such hectic lives, with too many demands for attention, angst, and outrage. Snow storms have a way of forcing us to stop, recalibrate, and rethink what is truly essential. Staring at that blank, white canvas that conceals flaws and inspires such wonderment, I am grateful for the peaceful quiet.

A brilliant red cardinal perches on the yew’s bended boughs, in magnificent contrast to white and green. A black-capped chickadee, white breast puffed against the cold, hops amidst the branches, scattering snow. A tufted titmouse scrabbles on my windowsill. I’m glad our bird feeder is full.

Soon enough, life’s realities will crash through. But for this fleeting day, at least, beauty reigns in a pristine world.

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: Robert Thiemann

In a Word

· · 4 Comments

Nearly 40 years ago, when I first experienced symptoms of what I later learned was scleroderma, I found myself exhausted. There were plenty of logical explanations. I was in entrepreneurial mode, trying to launch a statewide news service for four NPR affiliates, and running myself ragged. I wasn’t sleeping well. My first marriage had just broken up, and I was struggling with a deep sense of failure. My gut was reacting to all the stress, and I was losing weight.

Fortunately, I had found a strong community in a local synagogue, and the mother of one of my friends offered to take me in and help me get back on my feet. She was a blunt woman, but she was also kind and a good cook, and after a week in her home, I began to regain my strength. And she told me this: It doesn’t take long to wear yourself down, but it takes a long time to build yourself back up again.

I have thought of those wise words many times since.

Of all the things I’m grateful for this Thanksgiving, I’m particularly grateful that in America we can express ourselves freely. But that freedom comes with profound responsibility. Words are powerful. What we say to each other and how we say it matters. It has become alarmingly clear that words can all too easily destroy what is best about our country, and it will take a long time to restore what we’ve already lost.

I hope the conversation around your dinner table is replete with all the respect and empathy so absent in our national dialogue. Each of us needs to be heard, but each needs to listen, really listen, too. That’s where true healing begins. Happy Thanksgiving.

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: Scott Webb

The Eagle Has Landed

· · 2 Comments

Last Friday, as I was walking toward the Back Bay train station in Boston on a sunny afternoon, I came upon a crowd of people chatting and taking pictures with their cell phones. There on the sidewalk was a beautiful, huge, black-and-white-mottled bird—big as a wild turkey, but not—with a rectangular head, stern golden eyes, and a yellow beak with a pointed, curved tip. Wildlife in the city!

But as I reached into my coat pocket for my own phone, I noticed something odd about the scene—gray and white feathers, enough to fill a pillow, scattered everywhere. And then something else—a bloody carcass that the bird was in the process of shredding and eating. “It’s rather gruesome,” one of the paparazzi commented, “but my son will be fascinated.”

Yes, indeed. Gruesome and mesmerizing. As I later determined from my bird field guide, the predator was an immature bald eagle feasting on a pigeon in Copley Square.

And no, I did not take a picture. I felt really bad for the pigeon.

Now, for those of you who have no sympathy for pigeons and consider them flying rats or worse, hear me out. I’ve done a lot of reading about pigeons in the past few years, as they figure prominently in the World War I novel that I’ve been writing (now in third draft revisions). They are truly remarkable creatures.

For one thing, pigeons are loyal. They mate for life and live as a couple. (So do bald eagles, apparently, as well as puffins, another of my favorites.)

They come in an astounding array of colors. Even common gray pigeons have stunning iridescent, jewel-toned feathers. Just take a closer look next time you see one in the sun.

They have an extraordinary ability to find their way home, somehow sensing the Earth’s magnetic fields. That’s why pigeons have been deployed since ancient Rome to carry messages.

Which brings me to the fact that the humble pigeon has saved lives. One of the most famous was Cher Ami (Dear Friend), who delivered a vital message that led to the rescue of more than 500 American soldiers during World War I. (And no, he’s not the pigeon in my novel, but certainly an inspiration). This little pigeon survived a bullet to fly 25 miles in a half-hour and deliver his life-saving message. He was awarded the Croix de Guerre by the French for bravery. His stuffed body still resides in the Smithsonian.

The predator eagle was certainly just doing what wildlife do on that Boston sidewalk, eating its prey. And we are all certainly drawn to the unusual, unexpected spectacle, and the exercise of raw power—these days, more than ever, it seems. All too easy to ignore or discount the subtle, the nuanced, the peaceful.

As I reached the train station, I was heartened to see a score of pigeons hanging out in the sunshine by the entrance. An everyday city sight, but so calming, no crowds. Nearby, a young man kneeled with his cellphone, taking their picture.

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.

Images: Top, Patrick Brinksma; Bottom, Zac Ong

Mercurial

· · 4 Comments

As I write on Monday, Mercury is making history for us Earthlings by revealing its silhouette while passing between us and the sun. The next Mercury transit won’t occur until 2032. Pretty cool (or hot, depending on which side of the planet we’re talking about—day side temps go up to 800 degrees Fahrenheit, while the dark side can drop to minus 290 F). You can watch a short NASA video of the phenomenon here.

Then there’s the fact that Mercury has been in retrograde for the third time in 2019, from October 31 to November 20. That means the first planet in our solar system appears to go backwards in its orbit, an optical illusion. According to astrologists (as opposed to astronomers), this explains any mishaps you’ve been having lately with technology or relationships, since Mercury, named for the Roman messenger god, governs communications.

Certainly, there’s no rigorous scientific evidence to back up that belief, but Mercury in retrograde sure makes a convenient scapegoat for all the stuff that’s seemed out of whack in my life, of late. These episodes include my recent fall (knee is still healing, although X-rays on Friday reassured me that nothing was broken), the disappearance of my very talented hair stylist (she left her salon and has dropped out of contact, to my great dismay), getting a really nasty cold for the past week (now in remission), and missing a significant typo on a printing job (expensive fix).

What next? Given all the bad news here on Earth these days, it’s easy to get paranoid. Or blame another planet.

Of course, none of my problems are truly earth-shattering. My body can still heal itself, thank goodness, my hair will grow back after the poor haircut I got last week from a less experienced stylist, and the print job was salvaged. The stories we tell ourselves to explain frustrating, annoying, stupid, upsetting events often don’t make much more sense, when held up to the light, than the notion that a planet controls our lives.

Time slips through our fingers like mercury—or quicksilver, if you prefer. Mishaps pass. Misfortunes change. The next time Mercury transits across the sun, I hope all of us will be in a much better place.

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: Hermes and Athena, fresco by Bartholomeus Spranger, circa 1585, Prague Castle, via Wikimedia Commons.

Best Laid Plans

· · 2 Comments

A week ago Monday, I was on my way home from a two-day philanthropy board meeting in New Jersey, and I had a plan. My German language class meets in Boston on Monday nights, and I didn’t want to miss it, so I had booked roundtrip flights (plus carbon offsets) from Boston to Newark far enough in advance to get a good price (usually, when we meet, I drive to New Haven and take the train). My afternoon flight back to Boston was due in around 3:30, giving me plenty of time to retrieve my car from long-term parking, drive into the city and park, then get some dinner and be at class for 6:15.

As I said, I had a plan. Air traffic in Boston, however, was in no mood to cooperate. Despite good weather, our flight was delayed in Newark by about an hour due to a busy day at Logan. Still, I figured when we landed after 4:00, I had plenty of time to get dinner. The van to the parking lot arrived right away . . . but as soon as we left the airport, we got stuck in traffic. Why? Because the Chelsea drawbridge was open. Maybe twenty minutes passed until we finally got up to the bridge and . . . the gates went down and the bridge began to rise again because another ship was sailing through. Our driver turned around and drove the back route to the lot, earning a round of applause from all of us passengers. Still, this jaunt had now taken as long as my flight.

I got to my car, it turned on (thankfully), and I started to navigate my way into Boston in what was now high rush hour traffic, but WAZE was not really clear on where to turn, so it took a bit of intuition to find my way downtown. By now it was about 5:45, still enough time to park, grab some takeout, and get to class.

However . . . when I finally reached the garage where I’d reserved a space, the entrance was blocked (are you kidding me?) due to construction. A sign said to take three left turns to get to the alternate entrance, but I was pretty frazzled and hungry at this point, it was drizzling and getting dark, one way streets in Boston can be confusing, and I couldn’t find the other entrance, so I ended up parking on the street.

Usually, street parking in Boston uses an app. Not this space. It required putting a credit card in a meter. I tried dipping my card three times, with my fingers getting numb from the cold, but couldn’t grasp the card and retrieve it fast enough. Aargh!!! I stopped a trustworthy-looking young man who was walking by and asked if he could help, which he did, and I was able to pay.

Now it was after 6:00. And I was disoriented. How do I get to class from here? Trying to figure it out from Google Maps took a few false starts, but ultimately, I found the building, got through the reception desk security and up the elevator to our meeting place at WeWorks, which is shared office space. Our class meets in one of the conference rooms, but you need a key to get in (which our instructor has). And, as I scanned the lounge, no classmates were to be found, which meant they’d already gone to the room.

As I was looking to see if I’d missed someone, I took a step . . . and tripped over a stuffed ottoman near a couch. Wham! I landed on hands and especially on my right knee. It hurt. A lot. A fellow sitting nearby asked if I was okay (“No!” I cried) and helped me up. I could still walk, fortunately, and a woman who was cleaning the kitchen area let me into the locked section of the office space. She also, at my request, kindly filled a bag of ice, which I used to reduce swelling in my knee for the next couple of hours.

No way I was going to skip class after overcoming all those obstacles! But I did leave an hour early, because I was quite hungry, tired, and still had an hour’s drive home. Al met me with a big hug and bowl of warm soup, which was exactly what I needed.

A week later, my right knee remains a bit black-and-blue and is not quite back to normal. If I continue having issues later this week, I’ll go for an X-ray to be sure I didn’t do anything other than sprain it. The rest of my fall-related aches and pains have resolved. Most importantly, I did not hurt my hands. This is the real miracle of the whole episode.

The older I get, the more the idea of falling scares me. If I can find any silver lining in this escapade, it’s the fact that my hands are unharmed, and I don’t seem to have broken anything. I didn’t give up and still attended most of the class. It was an important reminder to be mindful of where I’m stepping. And my husband gives the best hugs in the world.

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: Alexander Schimmeck