Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Beta Test

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This summer, I’m in charge of Emily’s fish. He’s a cobalt blue Beta named Stitch, and he lives in a large glass bowl on our living room mantel, our little guest while Em’s away at an internship for her master’s degree program.

So far, I’ve succeeding in keeping him alive. This is remarkable, because when our girls were in grade school and went through a phase of having Betas (notice the plural), at least three of them died in fairly rapid succession.

This may have been due to the fact that we kept the fish bowl on top of the shelving that held our TV, and the water could have overheated. Or, more likely, it may have been due to the fact that I tried to clean the bowl and change the water every so often and probably shocked the poor fish to death.

This time, all I have to do is give Stitch two pellets of food every morning and add a little distilled water to his tank when the level drops by about an inch. Easy enough.

It took me a few tries to figure out how best to give him the pellets. They are very tiny, and I can’t grasp them with my fingers. So I scoop them out of their bag with a plastic spoon. Then I drop them into the water, being very careful not to drop the spoon in the water, too. That would not go over well.

For Stitch, this is the highlight of his day. As soon as I walk over to his tank and say hello (yes, I do talk to him), he swims over and jiggles around, fluttering his translucent blue flippers in what I can only describe as great fishy excitement. He doesn’t always find the pellets right away, so I tap the bowl in the right direction to give him a hint. Then he gulps them down. And swims back to see if I’m going to give him any more.

At this point, I say good bye and walk away, so as not to raise his expectations that there’s more food to come.

Really, it’s amazing how much you can commune with a fish.

I wonder what he’s thinking in his little Beta brain. Clearly, he’s learned how to recognize me, even if he doesn’t have a clue who or what I am, other than his source of food. I wonder if he hears the music on the stereo or the radio. Or our voices when Al and I are talking.

Mostly, he just floats gracefully around in his bowl, up and down, around and around. Sometimes he sleeps. Sometimes he zig zags. Sometimes he flutters. He seems content. Nothing to do, but just be.

I almost forgot to feed him one day last week—trying to do too much in too little time, juggling a lot of projects and family events and other responsibilities. I’m traveling on business again later this week, and I’ve been pushing to finish one thing and another before I go away overnight.

I’ll be sure to say goodbye to our grandfish before I leave (Al’s in charge while I’m away). And try to remember, in the midst of all my busyness, what Stitch does so well—just be.

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.

A Little Night Music

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It’s really cold here, nine degrees on Monday night. Our street is a sheet of ice following a relatively warm day on Sunday—above freezing, WOW—when the snow that fell overnight melted and then refroze as temperatures dropped.

photoBut Saturday night, despite more snow, Al and I made it to a concert of Latin chamber music at Clark University performed by the Worcester Chamber Music Society, featuring Argentine guest soloist JP Jofre, a world class artist on the bandoneón, a type of concertina.

There is no better antidote to yet more snow than hearing the tango on the bandoneón.

When we got home, I decided to take a walk around the block. It was snowing gently, and the temperatures were just below freezing, so it felt relatively mild, even for me. The fresh snow coated all the dirty drifts that have narrowed our roads to nearly one way and freshened the landscape, transforming tree boughs to white lace.

I had the street all to myself. It was quiet and peaceful. Ginger would have loved it.

This winter will eventually come to an end. A week from Sunday, March 8, we switch to Daylight Savings Time and it will be lighter in the evening. The snow will melt (maybe by June).

So, to nudge things along and give you a little break from your own winter doldrums, here’s a video of Jofre performing Ástor Piazzolla’s Escualo with the JP Jofre Hard Tango Chamber Band at NYC’s Le Poisson Rouge in September, 2012. Tango, anyone?

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.

Snow Denying

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On behalf of all of us up here in Massachusetts, where the snow never ceases, I have decided that it’s spring. After yet another foot-plus of snow here over an extended weekend storm and predictions of even more snow heading our way on Thursday, plus Arctic temperatures, plus maybe one more storm over the weekend, I think we’re entitled to some delusional thinking.

And so, here are pictures from a couple of weekends ago at the Worcester Art Museum‘s annual Flora in Winter display. Wherever you live, whatever outrageous, frustrating, totally-out-of-your-control circumstances are dogging you, I hope these bring a little warm sunshine to you day. Enjoy!

WAM 2
WAM 6
WAM 1

WAM 3

WAM 5

WAM 4

 

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.

The Big Bang

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Last Tuesday night, I was backing out of our driveway, minding my own business and listening to music, when, WHAM, I hit something. Now I’m a careful driver, and I had checked both directions before moving. It was really dark out. I was not happy.

I pulled over to the side of the road to see what happened. Not only had I hit something—I had hit Al’s Honda Civic. He’d parked on the street, because our eldest was home visiting and her car was in his normal spot to the side of the driveway, but I didn’t see his car when I backed out.

Not only had I hit Al’s car, but I’d dented the passenger door on the driver’s side. Thirty seconds at five miles an hour. Hundreds of dollars of damage. I hurried back into the house to tell him.

To Al’s great credit, he didn’t get upset or angry. He gave me a hug. We went outside to look at the door. It still opened and closed properly. He told me not to worry and to go on to my weaving class. For the next hour-and-a-half, as I wove, all I could think of was that I was determined to make the repairs, regardless of the cost.

Then I got home and took a closer look at my Prius. Not only had I dented Al’s car door, but I had cracked my rear bumper. It’s fiberglass, one piece. More dollars flying out the window. How is it possible to be driving so slowly and do so much damage to two cars?

The day after New Year’s, Al took the cars to a trusted autobody shop and got the estimates. Well, it wasn’t as bad as I expected, but it was bad enough—$750 to repair both. Oh, boy. We decided to go ahead, because I wanted to fix what I’d messed up.

So, for the next couple of weeks, we’ll have one or the other car in the shop. We’ll find the money somehow, the cars will look as if nothing had ever happened, and I will most certainly try not to make that expensive mistake again.

With a few more days’ hindsight, here are my bigger takeaways:

The older I get, the more closely I have to pay attention when driving at night.

I’m very lucky to have such a good husband who doesn’t get mad when I bang up his car.

We’re fortunate to be able to repair both cars, even if it will take a few more months to pay off the credit card.

They’re just cars. They aren’t people. No one was hurt.

Now, if only I could find a body shop that would make me good as new for $750—that would be something.

Photo Credit: Flickr Creative Commons

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.

Around the Block

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I’m not yet used to earlier sunsets. It always takes me a few weeks to adjust when we turn back the clocks for standard time. On Friday afternoon, I was running around, trying to finish errands before sundown, which heralds our Shabbat observance, and just made it home as dusk settled. Whew.

Back to my desk on Monday, I lost track again, this time because I was immersed in my writing, only to realize it was nearly 4 o’clock in the afternoon and I had not yet walked Ginger. I should have taken her out when it was brighter and warmer after lunch, but she needed the exercise. I did, too.

So, despite the darkening, chilly fall afternoon (for me—others I passed were in fleece vests or zip-up jackets), I donned my down winter coat and a hat, clipped Ginger’s leash to her collar and headed out the door.

A lungful of fresh air immediately helped to clear my brain, woolly with words. Ginger paused by the huge pile of dried leaves in front of our curb to explore the many and varied, fascinating scents. Our walks take longer this time of year, until all the leaves have fallen and city streets are swept clean. I have to urge her to keep walking so my hands don’t go numb.

“That dog is amazing,” commented our neighbor, walking her puffy little pooch in the opposite direction. Our white-faced golden is 16, but still can pull me down the street if she has a mind to. My neighbor’s dog decided to lie down in the street and watch us, but Ginger, whose nose is better than her ears and eyes, ignored it and kept on snuffling, leading me slowly forward.

Around the corner, two boys in shirtsleeves shot hoops in a driveway. Everything glowed with a deep orange patina—the piles of rakings along either side of the street, the Norway maples that still clung to a few golden leaves, Ginger’s fur, the errant basketball that rolled across our path. “How are you?” asked the boy as he ran to retrieve it. We exchanged pleasantries, and he loped back to his game.

A friend wisely observed over the weekend that all the frightening headlines (Ebola! ISIS! Washington Gridlock! Climate Change!) that describe a world in seeming collapse don’t really square with everyday experience. Most people are good. Many strangers can be trusted. A 12-year-old boy can be polite to a woman walking her old dog around the block.

As we rounded the next corner and headed up a slight hill, the sky turned salmon and violet. For a few astounding seconds, the trees and leaves seemed infused with an etherial, rose light. If I hadn’t left the house with Ginger at the exact, too-late moment, kicking myself for forgetting about the time change, I would have missed it.

Home again, dark settling in, I rubbed Ginger’s ears and thanked her for inspiring me to get out of the house. Sometimes the best part of the day is the part you wanted to avoid.

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.