Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Great Escape

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As temperatures skyrocketed here and across much of the U.S. this weekend, we decided to flee the 90+ degree heat and 100+ degree heat index and head to our favorite beach escape, Block Island, an hour’s ferry ride from the Rhode Island coast. A wise move. As soon as we parked the car at Point Judith, I breathed in all the good salt air and sea breeze, and exhaled a sigh of relief.

The heat back home was bad enough, the humidity awful, so it was actually a pleasure to pull on a sweater for the windy ferry ride. After a light lunch at our favorite bagel cafe, we walked to the state beach and settled down with rented chairs, umbrella, and our books. Water temp was about 68 degrees F, not bath water, but not icy cold, either. As Al splashed in the surf, I waded up to my knees and was able to stand there for about 15 minutes. This, alone, was a major accomplishment. Usually all I can do is dip my toes for a few seconds to claim that I actually felt the Atlantic for another summer.

After a long walk up the beach and back, watching all the kids surfing on boogie boards and dogs catching balls and young engineers digging sand trenches or building castles, Al turned to me and said, “You coming in?” So I took his hand and allowed him to gently help me get a little further and a little further, up to my hips. Small waves rolled and splashed, and I shivered and jumped.

Years ago, when I was an avid ocean bather, I would just run right in, dive through a wave, then jump and float for as long as I could before I turned blue and my teeth wouldn’t stop chattering. I miss those days, but I’ve had to become extremely cautious about ocean swimming, both due to cold water temps here in New England and because of all my digital ulcers, which could get infected by the sea water.

On this particular hot, hot Sunday, however, with only two ulcers—one a perpetual scab on my left thumb and the other, an exposed piece of calcium lodged in my right thumb—I decided to take a chance. So I dived in. Then shrieked from the cold when I came up for air. But I did it. Two people nearby applauded. Al laughed. It’s been so long since we’ve been able to go into the ocean together. (Last time was three summers ago, in the warm Mediterranean waters along Elba, an island off the Italian coast. That time, I actually got to swim. Al got stung by a jellyfish.)

I didn’t last long. The water was just too cold for me to stay and play. It was refreshing. I remained mostly cool for the rest of the afternoon, aided by a steady sea breeze. By five, I had changed my bandages, we were back in our street clothes and heading up the beach, picking up sea glass on our way to dinner. We nosed around the little shops, caught up with our daughters by phone, and sailed back on the ferry beneath a stunning sunset. Traffic was heavy going home, but it didn’t spoil the day.

And I didn’t read the news. That was the greatest escape of all.

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.

A Flamboyance of Flamingos

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This one is just silly. Because we all need some silliness these days.

I’ve been watching the birds at our feeder, a favorite meditation. The feeder looks like a globe cage (to keep out the squirrels) hanging from a pole attached to a maple in our backyard. We hadn’t filled the feeder in some time, because chipmunks had figured out how to climb the pole, slip into the feeder, and steal all the food. So far, they haven’t rediscovered it, although at least one squirrel has now learned how to climb the pole, jump onto the feeder, and swing it wildly so food dumps on the ground. Clever critters.

But back to the birds. Sparrows have taken over the feeder. They travel in gangs, which reminded me of all the wonderful words for groups of animals. There are the familiar terms—a pride of lions, a school of fish—but bird flock terminology is the best.

Take, for example, a quarrel of sparrows. So appropriate, considering how much they chatter and cheap.

Here are some other favorites:

  • a parliament of owls
  • a peep of chickens
  • a charm of hummingbirds
  • an asylum of loons
  • a palette of painted buntings
  • a Vatican of cardinals
  • and, best of all, a flamboyance of flamingos

Which got me to thinking . . . what if we had similar descriptors for professions, such as:

  • a vault of bankers
  • a drill of dentists
  • a hose of firefighters
  • a pontification of politicians
  • a diagnosis of doctors

Which then led me to specialists . . .

  • a pulse of cardiologists
  • a rash of dermatologists
  • a pod of orthopedists
  • an inflammation of rheumatologists
  • a stream of nephrologists

Which brings me to all of us who deal with specialists all the time. How about this?

  • a persistence of patients

Happy July.

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: v2osk

Curios

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It took me twenty years, but I finally set up my collection of curios this past Sunday. We had packed up my lovely figurines when we moved to our current home in June of 1999, and they had remained boxed ever since.

It’s not that I didn’t care about them anymore. Quite the contrary, each piece is quite special. But I kept putting off the task, and putting it off, and putting it off—because I was afraid I wouldn’t be able to do it without dropping and breaking them. My fingers just aren’t that nimble anymore.

I began collecting glass animals when I was a kid. Every summer, our family would vacation on Cape Cod, and one of the highlights of the trip was a visit to a store in Hyannis where an artist would manipulate sticks of glass over a bunsen burner to create whimsical creatures. If my parents had let me, I would have watched him for hours. Among my favorite purchases with allowance saved for weeks were a white horse rearing on its hind legs, a pair of pink elephants, a tiny red hippo, a dove, a turquoise dolphin.

At some point along the way, I was given my paternal grandfather’s collection of miniatures. These included two painted metal orchestras—one made up of frogs, and the other of monkeys, elephants, foxes and a devilish conductor. There were some carved wooden figurines, and some of carved ivory, as well. Eventually I found an enclosed glass curio box and displayed them in the living room of our prior home for many years.

I missed them. But with all the bandages and ulcers and Raynaud’s and hand surgery, I just couldn’t get myself to risk displaying them again. That is, until this past year, when I began keeping a Bullet Journal, which is a great system for keeping track of just about anything you need to get done. For my list of things I wanted to accomplish around the house, I added in setting up my curio collection.

Now, you can keep pushing off items in a Bullet Journal and rewriting them in the next week’s or month’s to-do list. But after rewriting an item enough times, you realize that either you should take it off the list, or just do it, already. Given that June marked the twentieth anniversary of our move, it really was high time to take care of it.

So last week, I found the box with my collection, marked “fragile,” on the top shelf of my closet. It was filled with plastic ziplock bags, each containing about ten figurines, carefully wrapped in tissues. But where was the curio display box? Upstairs, downstairs, in the basement I searched, to no avail. Then Al came home, and within a half-hour, found it in the basement—in a box marked “glass box.” Well.

The glass box was in perfect shape, cushioned by yellowed newspapers from June 1999. I figured out a good spot to hang it in the living room, measured the box and marked the wall, and tried to hammer a picture hook at the correct spot. It slipped and dropped to the floor. I tried again, using a pair of needle-nosed pliers to hold the nail. This time I was able to start it, but the angle was wrong as I tapped with a tack hammer. Time to ask for help if I wanted to finish before dark. Al took care of the hooks and hanging the box.

Now it was time to place the figurines. As I unwrapped each one, it was like meeting old friends. Using a pair of round-nosed pliers from my jewelry-making supplies, I was able to place them without too much trouble. That is, until one piece, a green glass octopus, slipped, bounced on the floor and disappeared. I stopped myself from trying to move things around to find it, since I didn’t want to cause any more damage or knock another figurine out of the box. The whole process took several hours. Finally, when everything was in place, I poked around on the floor. There was the octopus, lodged between some CDs in Al’s music collection—in tact!

So, now all my little friends are back on display. I took my time, worked my way around the dexterity issue with the right tools, and didn’t break anything. And I can finally take that task off my list.

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.

Summer Solstice

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At Stonehenge in England this past Friday, about 10,000 people gathered to watch the sun rise in perfect alignment with the entrance to the ancient stone circle. The summer solstice has come and gone in the Northern Hemisphere. Even as we mark the beginning of warm summer months, the days are now growing shorter once again.

Somehow, I wish the days could just stay longer for a little while. Even as we have months of (I hope) balmy weather ahead, there’s something that always makes me a little sad when the solstice passes, and our half of the Earth begins to tip every so slowly away from the sun for the next six months. It’s all in my head, I know. But still.

My hands and feet are just so much happier during the long days of summer. That is, of course, so long as I stay out of overly air-conditioned buildings. I took advantage of a sale this past week and got some new wrist warmers to add to my collection—as essential in the summer when stores and restaurants insist on maintaining arctic temperatures, as in the winter when arctic air blows into New England from Canada.

At least I can now take my neighborhood walks without a jacket or even a sweater. It’s easier to get out the door for appointments, too. Less stuff to put on.

Time to savor summer, even as daylight slowly dwindles.

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: Hello I’m Nik

Time Travel

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It was just two weeks ago, on Monday, that I flew home from Florida after meeting my cousin and her parents for the first time. But it already seems much longer. That’s one of the strange aspects of time and distance: You can go away and feel completely immersed in a new place, with new people, and then return home, where it feels like all that was a dream.

But it most certainly was real. Last fall, out of the blue, I received a message from my second cousin. Her mother, who is now 95, was my mother’s first cousin; her grandmother was my grandfather’s younger sister. Our mothers grew up together in Berlin, but went separate ways when my mother and grandparents immigrated to America in 1936. My cousin’s side of the family moved to Bulgaria and waited out the Second World War until 1948, when my grandfather sponsored them to come to the U.S. Like me, my cousin was born in the States. Her family settled in the Midwest, and mine eventually made a home on the East Coast.

I knew of her, and she knew of me, but for reasons that neither of us could figure out (“Why have we never met?” was one of the weekend’s refrains), our mothers never saw fit to get together as adults. They did, however, maintain a robust email correspondence in their seventies, which ended with my mother’s death in 1999.

Fast forward to the recent past, when my cousin moved her parents (her dad is 94) from their Indiana home to Florida, so that she could care for them close by. In the process, she discovered a treasure trove of family pictures and other memorabilia. And, fortunately for me, she couldn’t bear to toss any of it. She wondered if I or my sister might want some of the photos, poems written for special occasions, wedding invitations, death notices, steamship manifests, greeting cards, thank you notes, and more. A determined researcher, she found me and took a chance on making a call.

Since that initial contact, we’ve been emailing back and forth. I asked if I could meet her and her parents, and received an enthusiastic yes. So, I went. We hit it off immediately and stayed up late each night talking about family and all that we have in common. Her husband was out of town, and two grown sons off on their own, so we had the house to ourselves. It was wonderful to spend time with her parents, too; we had great conversations about family history and even spoke a little German. And my cousin and I got to the beach.

So many photos, so many memories, so many stories. There were pictures of my grandfather’s youngest sister, who died when she was 26, before the War. I had always heard of her, but never known what she looked like. There were pictures of my grandparents as a young couple, and of my grandmother as a girl with a huge bow in her hair. There was a poem that my mother, then an infant, supposedly wrote on the occasion of a family wedding. There was a picture of my grandmother tending my mother as a baby. There was a family tree with information my cousin had gleaned as a high school student from her grandmother, which filled in some missing puzzle pieces.

There were also many photos of people I did not recognize. My cousin still hopes to find out their identity. She feels a pull to honor their memory. And harbors a deep wish not to end up as a nameless person in an image, whom no-one recognizes. It was a poignant observation, all the more relevant in this digital age, when it’s so easy to point and shoot and amass thousands of images in the cloud, to live forever as bits of anonymous data.

It is strange how sepia-toned photographs call to us across time and distance. I stare at these images of my German relatives and wonder—what were they thinking when those photos were taken? What did they know of the coming storm that would force them to make the most difficult choice imaginable, of leaving home to escape such horrific danger? They look so innocent, so content in their familiar world.

And I wonder: how would our lives have been different if my cousin and her family had known mine, growing up? I’ve always wondered what it would be like to have a cousin. Both my parents were only children, and our extended family was very small. At least, now, thanks to my cousin, I can find out.

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.