Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

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!

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WAM 1

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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.

Enter Autumn

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The other day, as I was walking Ginger around the block, I heard a flock of Canada Geese honking overhead. I never saw them, but I envisioned them flying in V-formation, heading south.

August is over. I’m writing on the first day of September. Even though summer doesn’t officially end until later this month, Labor Day is always my turning point from the comfort of warm, long days of sunlight into the prospect of cooler, darker, busy fall.

Black-eyed Susans 9-1-14Sugar maple leaves are the first harbinger, speckling the sides of our street for the past few weeks with splashes of gold and tangerine. As the days grow shorter, the trees begin their annual rite of passage, hardening for winter. Today seems odd—it’s muggy, hot and very sunny. But the trees know better, what’s coming.

As I write, Emily and Al are packing a friend’s truck for the drive out to her new apartment. Grad school starts this week, both for her, as a first year master’s student, and for Mindi, entering her second and final year of her professional degree program. Closer to home, public schools began last week. Time, once again, to remember to avoid leaving the house mid-afternoon when school buses from nearby schools travel their routes.

I’ve spent much of my Labor Day weekend sewing. I’m nearly done with a new dress. But, of course, it’s a summery dress, not a fall outfit. For some reason, I am never able to sew ahead of the season. I bought the pattern in July. I’ve had the fabric, a beautiful fuchsia knit, for at least five years, purchased another summer with a different dress in mind.

Two weekends ago, I finally altered the pattern and cut out the pieces. I started sewing in the evenings, until our house was full with family, and I had to clear off the dining room table. So I dug in again yesterday, because I finally had time, and because I didn’t want the dress to wait another full year. I may still get some use out of it before the weather consistently cools off.

I am a slow sewer. I have to pace myself because of my hands, and I can’t manage the fabric as well as I once could, which is why I don’t sew often. Picking out seams when I mess up, which is more often than I’d like, is tricky and tedious. I’m more willing to live with mistakes that no one else will notice, given my limitations. The end result is still good enough, albeit not the perfection I’d prefer.

I would like to sew more. My favorite sewing magazine is full of luscious fall fabrics in autumnal hues. The dress pattern I’m using comes from a designer who creates lovely, easy-to-construct clothes. I hate shopping for ready-to-wear, and sewing is the perfect antidote—not only a way to create unique clothes that actually fit, but also a great meditation. Nonetheless, I have to respect my hands. And my energy. And the number of hours in the day.

Ahead lies a solid lineup of work and creative projects to take me well into the fall. Much as I love the summer months, it’s easier to concentrate as the weather cools and everyone else is back to work or school. The trees may shed their leaves and the geese fly south, the weather will inevitably make me long for warmer days and fewer layers, but I’m looking forward to the crisp crackle of new beginnings.

I just need to sew up that wonderful warm fabric I wove last winter into a jacket, before the days grow long again.

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.

One More Thing

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As my family well knows, I have a bad habit of trying to squeeze in as many items on my to-do list as possible before I head out the door. I get a lot done, but all too often I run late—not horribly late, and I manage to make most appointments on time, but when the deadline is less rigid, I can slide five, ten minutes behind.

The problem is that everything usually works out fine, anyway, which just reinforces my obsession with getting that One More Thing done.

Except for Monday morning, when I had to catch a train to Boston to catch the bus to Logan for a flight to Kansas City on business. (Fortunately, this has a happy ending, but this once again reinforces my bad habit, as you’ll see.)

I was well organized for my trip when I got up, relatively on time (mornings are always hard, as my body is sluggish). My bag was 99 percent packed. Did my exercises. So far, so good. Stopped myself from catching up on news and Facebook, so I wouldn’t waste precious minutes.

Then came the fateful decision to do One More Thing. I had a family project I wanted to finish before leaving the house, which I needed to complete online from our secure network, that I felt couldn’t wait until my return from my business trip later this week. It took about 15 minutes. I had just barely enough time to eat breakfast, finish packing, get dressed and race out the door with Al to get to the train station.

Challenging under even the best of circumstances. But I was also upset with myself, because in the midst of finishing my One More Thing project, I thought I’d messed up the online form because I was rushing and couldn’t backtrack. As I finished shoving the last few items into my suitcase, my hands started shaking. This always happens when I hurry and get stressed. Totally involuntary and very frustrating—my coordination just gets worse.

So I ranted to Al all the way to the train. Fortunately, he is very calm when I freak out. As we drove up to the station, I could see the train waiting at the platform. I jumped out of the car, Al grabbed my bag from the trunk, we said a quick goodbye, and I ran as best I could toward the platform . . . only to watch the train pull away. As one of the conductors, standing on a coach staircase, slid by me, he shook his head and shrugged. Just another late, would-be passenger.

At this point, I started crying. There are many things in this world worth crying about, and this wasn’t one of them, but I was just so frustrated with myself. Al to the rescue (fortunately, he had waited to be sure I got on) with a big hug. Rather than go home and come back in two hours to catch the next train, which would have risked a tight rush to the airport, he drove me in to Logan.

Now, here’s where my One More Thing habit gets reinforced. The ride into town had the advantage of saving my hands from dragging my carry-on from train through South Station to bus to airport. We said a real good-bye when Al dropped me off. I made it through security in 10 minutes, bought a bagel and found a table where I could write before every space was taken later in the morning. And, to top it off, I found out through an email exchange about my One More Thing project that I’d completed the online form correctly, after all. No problem!

Next time I miss a train because I’m trying to do too much, I still hope my loving husband will take pity on me once again and save the day. But I honestly don’t want to cut it so close to the wire, for myself (too much stress) or for him. (Hear that, Al? Thanks again! Love you!)

It’s comforting to know that life usually works out, even when you think you’ve messed up. But it’s also good to remember that One More Thing can usually wait. (Hear that, me?)

Photo Credit: Éole via Compfight cc

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.