Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Flu Season

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Despite our vaccines last fall, the flu has found its way into our home. On Sunday afternoon, Al came back from running errands, went upstairs and went to bed. He never does this. He roused for supper and ate well, then lay down on the couch. Definitely out of character.

So I dug out a Covid test from under the bathroom sink. It had an expiration date of last June, but I gave it to him anyway, and it was negative. Then I took his temp. He was running a fever. Time to go out to CVS and pick up a few combination Covid/Flu tests.

It was dark and cold outside, about 16°F. I found the tests and an OTC med for his symptoms, and was on my way out the door when a tall, thin man standing by the side of the building called out to me. “Excuse me, Ma’am, but can you spare a dollar?” he asked. It was cold, I was in a hurry to get home, and I don’t usually have cash on me. So I declined.

As I sat in my car, with the heat on, organizing my purchases, I felt terrible. Here was a poor soul in the freezing cold, politely begging for a small handout. I thought of all the people in Minneapolis who are taking such good care of their neighbors under duress. I looked in my wallet and realized I had some bills. So I got out of the car, went back to the man and handed him a dollar. He was so grateful. He had no gloves, no hat, a shabby winter coat. It wasn’t enough, but at least it was something.

I thought about him all the way home.

Back at our house, I gave Al the new combination test. Still negative for Covid, but positive for Type A flu. Good grief. Called our medical practice, got some advice, and as I write Monday afternoon, I’m still waiting to find out if I can pick up some Tamaflu antiviral medicine for Al. I’m hoping the fatigue that has settled over me today is just fatigue.

And what of the man outside the CVS in the brutal cold? I hope he found warm shelter. I hope he bought something hot to drink. Next time I’m asked, I’ll do better.

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: Ales Krivec

Storm Watch

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As of midday Monday, as I write, we are immersed in white. Al shoveled a foot-and-a-half of snow for two hours this morning, then fell asleep in his armchair for a while. At some point this afternoon he’ll go back outside and finish clearing our drive. We’re expecting up to another three inches by nightfall.

I’m glad he took a break. The snow is fluffy, but even so, it’s a lot of work. I wish I could help, but between the extreme cold and my hands, there is no way for me to do so. Indeed, it’s been decades since I could shovel snow. The last time I can recall, we still lived in our prior home on a major street, and as I was trying to clear the foot of the drive, a plow went by and blocked it up again. The guys in the plow laughed.

Today, Al told me, the plow that was doing another pass on our street actually stopped and helped to clear the end of our drive as well as our neighbor’s across the street.

Looking out for each other is essential in a storm, all the more so today when the storm is not just weather-driven. To the people of Minneapolis, my heart goes out to all of you, especially to the grieving families and friends of Renée Good and Alex Pretti, as well as my gratitude for showing the world what it really means to be in community—in the most bitter, cold, savage circumstances.

I contacted my senators today to express my outrage and ask them to use every tool available to stop this madness when they vote on appropriations this week. It took all of five minutes. It’s the very least I could do. You can find contact information for your congresspeople here.

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.

What We Take for Granted

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Early Monday morning I was awakened by what I thought, in my half-dream state, were raccoons or some other large critters running around on our roof and climbing in the gutters. Then I heard voices outside. I roused myself to look out the front window and discovered a row of city public works trucks outside, yellow lights blinking, and a backhoe with some kind of drill punching holes in the pavement in front of our neighbor’s driveway. Each punch made our house tremble.

Some mighty big raccoons!

The trucks were still there when the sun rose. Turns out a water main on our street had cracked open in this very frigid weather we’re enduring. So, no water for morning ablutions or anything else. Fortunately, Al had left a large plastic pitcher of water on the kitchen counter the night before, so I could use some to remove my bandages and wash my hands before re-dressing them, as well as water to rinse my eyelids, essential for my cleansing ritual for very dry eyes.

Within a few hours, a new pipe was installed and the crew began refilling the large open pit on the street. I went outside to thank them, because I’d learned from one of our neighbors that they’d been there all night. Not enough workers available to cover in shifts (another main had broken on a nearby thoroughfare the same night). The man I spoke with was very polite and informative, and he said our water would be back on soon.

Sure enough, within the hour, it flowed—gritty, at first, with a burst of trapped air, but running clear soon after.

The whole experience really struck me. It’s bad enough when power goes out in a storm. But losing water is truly disruptive. We’re so used to easy access. Just turn on the tap and fill your cup, wash the dishes, brush your teeth. Flush the toilet and, poof, your poop is gone.

It’s easy to criticize the city for a broken water main, for old infrastructure that hasn’t been updated, for all the inconvenience and disruption. But I am truly grateful to these guys for coming to our rescue in the middle of the night and staying the course in bitter cold to restore this most basic of needs. When I thanked the crew leader, he said, “It means a lot to hear that.” Another neighbor ran out and brought the crew a dozen doughnuts.

For all the disparaging remarks in casual chatter, on social media and elsewhere about government workers being lazy, corrupt, or otherwise deplorable, most are honest, hard working, and devoted to their jobs of making our lives easier. They truly deserve our respect and thanks.

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: Joshua Junior

Self Pep Talk

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It’s only December and it feels like January here in Massachusetts. Rolling up in a ball and hibernating sounds enticing. It’s hard to get myself out of the house, let alone out of bed in the morning. When I sit too long at my computer, I stiffen and need to rouse myself.

But I know that if I don’t get up and out, I’ll feel even worse. Moving is what keeps me moving, getting blood circulating in my brain and into my fingers and toes.

So, I kept a commitment on Friday morning, even as it was only single digits outside, to go with a friend to a special awards luncheon an hour’s drive from here for a project we’d worked on for our fair city. It was uplifting and fun and just an all-around good experience. On Saturday, I made myself walk, bundled up, to synagogue, and then later spent a pleasant afternoon studying texts with two good friends.

Then on Sunday, Al and I went to Hartford, Conn., to celebrate our 41st anniversary (which is actually today). Why Hartford, you ask, when Boston, with all of its cultural attractions, is just an hour away? Because there is a wonderful art museum there, the Wadsworth Atheneum. We also took in a ballet performance of The Enchanted Toy Shop by a local conservatory and had a really nice Italian dinner after. None of which cost anywhere near what Boston costs, and the street parking on weekends is free.

And, despite 21 degrees outside as I write on Monday afternoon, I’m about to head out to Pilates and to do some errands. And I have my acting class tonight at our local conservatory.

All of this reminds me, even as my instinct is just to burrow under the covers, that I really do better when I stay active—mentally, emotionally, spiritually. Being physical is a real challenge this time of year, but the more I move and keep stimulating my brain, the more those physical challenges seem manageable. As I keep telling myself.

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: Lydia Reclining on a Divan, c. 1882, possibly by Mary Cassatt, Wadsworth Atheneum

Touch Type

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As I was writing just now, I realized that I am typing with only my pinkies these days, with my thumbs handling the space bar. (Using an Apple keyboard makes this possible, because it requires only a very light touch.) Usually I also use my right ring finger, but it’s been out of commission for a few weeks due to another ulcer, which, of course, formed on a pressure point, as in where I touch the keys.

What’s so interesting about this is that I don’t actually notice, most of the time, how I’m typing. My hands have learned to adjust to various fingers being unavailable for so long that they “know” the distance between keys without my having to look (for the most part). Kinesthetic memory is a powerful sensory skill.

Many decades ago, when I could still play the violin, I could hear a piece of music and sense in my fingers how to play it—where each fingertip would land on the strings, which direction to ply the bow. I certainly can’t play Mendelssohn anymore, but sometimes I can still almost know, intuitively, how.

So, I guess I haven’t lost that skill. It’s just emerged in a different way. Pretty neat.

Our brains and bodies are quite amazing, even when they don’t work perfectly anymore.

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: Wayne Hollman