Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Swelter Skelter

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It takes a lot for me to sweat. I rarely get that overheated, since my body revels in warm weather, even hot. But humidity is another matter altogether.

July 4th weekend here in Central Massachusetts, the air was thick. The sweat was literally pouring down my face. That sensation is so rare for me, I was surprised. I had an annoying cough, too, so I wondered if that had something to do with it. Was it the air quality or a cold that was irritating my lungs? Why was I sweating so much?

The TV meteorologist had a simple answer: The humidity was so bad, it was “disgusting.” Agreed.

Disgusting enough for me to turn on our heat pumps, which double as dehumidifiers and A/C when it gets really bad. I hate A/C, because it inevitably makes my extremities numb, and avoid it at all costs, but I was perspiring so much that I finally caved. After a few hours, the house was bearable. By Saturday evening, thunderstorms had rolled through and taken care of the rest. Sunday, the weather was a blessing, and we opened the windows again.

On Monday, as I write, I’m back to my usual summer gear, a sweater over light clothes. I can sit at my computer and regulate the temperature in my home office to my precise needs. Outside, it’s in the high ’70s, sunny and dry. No need for anything but window screens and fresh air.

Now there’s mounting evidence that some of my aversion to air conditioning has nothing to do with scleroderma and Raynaud’s, and everything to do with gender.

According to a recent study, researchers at the University of Southern California and the WZB Berlin Social Science Center found that women perform better on verbal and math skills tests as the temperature rises. Women college students in Berlin improved test scores by 1.76 percent for every Celsius degree increase. And when indoor temperatures were raised from the 60s to 70s (Fahrenheit), their math test scores increased by 15 percent.

Any woman who has struggled to function in a frigid office space during the summer, wrapped in heavy sweaters or even winter coats, with a space heater under her desk, because the A/C is cranked to near refrigerator temperatures, recognizes the truth in this finding. (If this sounds all too familiar, feel free to cite this study to the Powers That Be. Here’s the full report.) I used to suffer in an office like that, and one of the great joys of working for myself is that I no longer have to put up with such energy-sucking practices.

So, I’m grateful to have an option when the humidity and heat overwhelm even me. But I’m also glad that I’m the one who gets to regulate the thermostat.

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: Vitor Pinto

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.

 

Gray Matter

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It was a beautiful weekend here in Central Massachusetts, sunny, warm, light breeze, no humidity. Walking the neighborhood was a real pleasure. Despite the lovely weather, however, I spent quite a few hours pouring over my German textbooks and dictionaries. We have a unit test in class Tuesday night, and even though it’s meant to check our own understanding and has nothing to do with grades (there are none), I don’t want to totally embarrass myself by leaving half the questions blank.

I am one of the oldest, if not the oldest member of our class. There is one other woman in her sixties (I think), a few fifty-somethings, a lot of twenty- and thirty-somethings, and one recent high school graduate. It is quite clear to me that a younger brain is more adept at learning a new language. I understand more than I can say, but when our teacher asks a question, my gray matter freezes up. Honestly, there are times, even with my strength in English, that the curtain drops in my brain when someone asks me a question these days, and I can’t find the word. All the more so in German.

However, I have noticed that some words come more readily than others. For instance, I have an easier time remembering German words for clothing (die Kleidung) than for housework (die Hausarbeit). Clearly, personal interests play a role here. On the other hand, gendered nouns are a real challenge. Why, for example, is a skirt masculine in German (der Rock), a dress neutral (das Kleid) and pants feminine (die Hose)? There are some clues in the spellings, but still. No way out but memorization. Which is a struggle.

Our test includes units on clothing, weather and festivals, as well as grammar for comparisons, favorites, explanations, and what you might wish for. Of all these topics, I particularly enjoyed learning weather vocabulary (being a weather nerd). It helps that many of the words are similar to English. Wind is, well, der Wind (although the ‘w’ has a ‘v’ sound). The sun is die Sonne. Rain is der Regen.

My favorite discovery in this particular chapter, however, was the phrase es donnert und blitzt. Which means (no elegant translation) that it’s thundering and lightening is flashing. This answers a conundrum from my childhood, in hearing The Night Before Christmas, why old St. Nicholas named two of his reindeer Donner and Blitzen. Who knew?

Overnight it may well donnert und blitz, as I write Monday evening. At least, that’s what the weather report says. But I’m glad to have enjoyed viel Sonnenschein this weekend. Now, if I could only clear der Nebel (the fog) that hinders my vocabulary recall, I’ll be all set.

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: Stefan Widua