Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Stuff and Nonsense

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The older I get, the less stuff I want to own. Al and I have been married for 30 years, and we’ve lived in our current home for 16. When we moved here, we brought a lot of boxes with us that we have yet to unpack. Since then, we’ve acquired more stuff. When you have the space, you fill it.

closetBut a lot of that stuff is no longer needed, no longer functional or just plain in the way, collecting dust. The stuff in good condition that’s outlived its usefulness for us could be beneficial for someone else. And whatever can’t be repurposed or recycled just needs to be tossed.

So, fueled by our recent bedbug scare—a false alarm, thank goodness, but enough of a scare to make me realize it’s high time to declutter—Al and I devoted a day-and-a-half over Labor Day weekend to getting rid of stuff. We’re far from finished, but we made a good start.

My first goal was to purge my wardrobe. I targeted anything that no longer fits (time to stop deluding myself that I will someday be able to wear clothes from when I was 10 pounds thinner), that I haven’t worn in years or that I really don’t like but have held onto for sentimental reasons. I not only went through my closet, but also every drawer in my bureau and nightstand.

And I found a lot of stuff to give away: mom jeans, sweatshirts and T’s, a couple of favorite jackets that I’ve tired of, shoes that I’ve loved but can no longer wear because my feet are so sensitive, hats that once looked good on me but don’t now because my face has thinned with age and scleroderma. I parted with some scarves that had been my mother’s, which I’ve never seriously considered wearing, a good overcoat that dwarfs me, silk blouses I haven’t touched in years. I filled ten bags.

At the same time, I also found some clothes that I was happy to rediscover: some silk liners that will keep me warm this winter and my good dance sneakers, which I thought I had lost somehow. Now that I’ve been walking more and building up my endurance, I’m planning to give Zoomba another try, with the right shoes.

We also tackled some of the clutter in our basement. Al had the brilliant idea of bringing a big box of old looseleaf binders to a neighborhood youth center, where kids study for their high school equivalency diplomas. I went through the very stuffed top drawer (out of five) in my old filing cabinet and reduced the contents to about two inches of papers that I want to keep. (No, I really don’t need to save every single student paper I graded during my years as an adjunct writing instructor at Clark University in the 1980s.)

After all that sifting, sorting, tossing and bagging, we brought a carload over to Goodwill, including my clothes, some of Al’s, bags of wire dry-cleaner hangers, old purses and knapsacks, and other miscellaneous stuff. Al set out bags and boxes for recycling on the curb. It was all gone the next day.

There is still a lot to do. It’s a project that will take us well into the colder days of fall. But it feels so good to be down to what I really enjoy owning, rather than holding onto stuff just out of habit, laziness or misplaced sentiment, that I’m inspired to keep at it. It’s true. Less is more

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.

Letting Go

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School’s back in session, election season is upon us (here in Massachusetts it’s Primary Day for local government races) and Rosh Hashanah, the Jewish New Year, is just around the corner. It’s a season of new beginnings—and a time, for me, to take stock of where I’m at, where I’m heading and how I could do/live/be better in the coming year.

With that in mind, I share the following animated video, which I saw this past weekend at a program at our synagogue, in preparation for the High Holidays. It’s all about dealing with people who have hurt you one way or another. Well worth the ten minutes, and the theme is universal. Especially when living with chronic illness, we need to use our energy well and manage stress. I hope you find it as thought-provoking as I did.

Animation, story and voices by Hanan Harchol (in case, for some reason, you can’t see the embedded video below, you’ll find the link here):

P.S. For those of you who aren’t familiar with Yiddish, a schmendrick is a stupid person, a fool, a nincompoop.

More from Hanan Harchol can be found at jewishfoodforthought.com

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.

Orange Moon

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With August now behind us, signs of fall are everywhere. On recent walks I’ve noticed that our neighbor’s sugar maple is just beginning to shed a few leaves. Nights are cooler. It’s already getting dark by 7:30.

photoBut I’m not quite ready to let go of summer. So it was a gift on Sunday—a beautiful, sunny, warm day—that Al and I made it to one of our favorite beaches on Block Island, just off the Rhode Island coast.

As a child, I loved to swim in the ocean. Our family would vacation on Cape Cod, and I’d always beg to go to Nauset Beach, part of the National Seashore on the Cape’s eastern coast. There I would play in the waves until I turned blue and my teeth chattered. Nothing could stop me from swimming and body surfing.

Decades later, I still love the ocean, but it’s been many years since I could get in the water. Most of the time, it’s simply too cold and not healthy, given my Raynaud’s. But even when the water is warmer (yesterday at Block Island it was 73ºF, pretty comfortable for the Atlantic up here), I can’t risk immersing my finger ulcers in the sea. Too high a chance of infection. One year, when the girls were young, I tried fastening latex gloves around my wrists with duct tape so I could swim, but the water still seeped in.

So I’ve learned to appreciate the ocean in other ways. While Al swam yesterday, I finished reading a novel. We took a long walk up the beach, examining pebbles and rocks, searching for sea glass. I dipped my toes in the water. I took some pictures. I listened to the mesmerizing sound of the waves. And I breathed in the wonderful moist air, which does wonders for my too-dry nose and scarred lungs.

The water is an endless source of fascination, ever changing. Then there are all the birds to watch. One particularly bold—or indifferent—white-and-gray herring gull strutted past me as I read, its yellow eye scanning the sand for leftovers, close enough for me to touch it if I’d dared. (I didn’t.)

As the afternoon shadows grew long, I bundled up in the various layers I’d brought—sweater, sweatshirt, blanket, hat. We left the beach, reluctantly, around 5:30, and walked back into town to find a place to eat dinner. It was still warm enough, away from the shore breeze, to dine outside.

Later, on the ferry back to the mainland, we sat on the top deck and watched the dark shapes of the island’s dunes slip by in the night. Even with the breeze created by the ferry’s forward motion, I was able to stay up top and enjoy the stars. As our boat neared Point Judith, we turned around to see the nearly full moon high over the horizon, casting a glistening shadow across the water. It was huge and orange, the color of summer sunsets and fall harvests.

I couldn’t have asked for a better ending to a great summer.

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.

Walk This Way

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Ever since we got back from vacation, I feel too sedentary. Instead of exploring for hours on foot (true, it was a bit more than my feet could handle), I’m sitting at my computer far too much. Ginger’s no longer here to bop my hands off the keyboard when it’s time to go out for a walk around the block. It’s all too easy just to keep writing and not get any exercise.

walk-on-1445129-639x424So I’m trying to change my habit. I’ve tracked a half-hour walking route around our neighborhood—a manageable distance—and my goal is to get my butt off the chair and out the door at least four times a week.

This is actually proving easier than I expected. In fact, it’s quite pleasant. (It helps to start a walking habit when it’s warm out.) I’ve made it out and about my route at least five times in the past week—even Monday evening, after a sweltering 90-degree day.

Em is home for a transitional break between her summer internship in D.C. and returning to grad school, so she’s joined me a couple of times for a walk-and-talk. On other days, I’ve enjoyed a chance to clear my head and walk in silence. There are plenty of street trees for shade and only a few cars on the side streets to watch out for. We’re fortunate to live in a safe neighborhood with plenty of dog walkers, cyclists, families pushing strollers and other folks out walking or jogging.

Sometimes, I find myself so deep in my head that I barely notice what’s around me. Other times, I try to focus on the colors of the houses and birdsong and gardens as a meditation, staying in the moment. I’ve decided it doesn’t matter which mode I’m in, as long as I stretch my legs, swing my arms and get lungfuls of fresh air for a good, aerobic half-hour.

What if it rains? Depends on how long and how intensely. My alternative is to go to the gym and ride the stationary bike—not as refreshing, but at least I’m exercising.

It remains to be seen how well I can keep this up as the weather gets cooler and, eventually, too cold for me to be outside. But I figure if I establish a solid pattern now, when the walking is easy, my body will get addicted to the exercise and I’ll crave it enough to stick with it.

I definitely feel better when I walk. And worse when I don’t. No doubt about that. I can do it any time I want. Best of all—it’s free.

So, no excuses. Time to get moving.

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.

Photo Credit: Francesco Maglione 

Hands On

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How did it get to be July, already? With Independence Day behind us, summer is really here. It’s sunny and lovely and warm, and my hands are happy. I’m down to two bandages for my digital ulcers, one on each thumb. Always remarkable this time of year when I can feel with most of my fingertips.

photo-24This has been especially helpful because I’ve been sewing dresses. We’re getting ready for vacation, traveling through Europe to mark our 30th wedding anniversary (last December) and to do some research for a novel I’m writing.

It’s been unseasonably hot there (no complaints from me, although I’m encouraged that the forecast does not include temps upwards of 100 F, which was the case this past week). Dresses, as a friend observed, are easy. You don’t need to figure out what goes with what. Just slip one on, and you’re ready for the day.

One of the great joys of sewing is feeling luscious fabrics as your create your outfit. I’m working on a pattern for a wrap dress, and I found a buttery soft, beautiful rayon matte jersey print to sew.

I’ve learned from many mistakes that it’s best to test the pattern and any alterations first, before risking the good fabric, and I found some black and white cotton jersey in my fabric stash—perfect for experimenting.

So now the test garment is completed, and it looks and fits well enough to take along on the trip. I cut out all the good fabric and began constructing the second version on Sunday. It sews and serges like a dream, and I’m on schedule for finishing before we leave.

Best of all, my hands are fine. Despite whacking one finger on my serger and pricking another with a pin, they feel good as I write. I sew mostly by machine. The serger, which sews, trims and overcasts seams all in one step, is a tremendous help, saving time and extra hand motions. Even though it requires a lot of care when threading (and can be persnickety if I miss a step), it is a real boon. My other essential tool is a good pair of bent-nose tweezers, which helps with all the tiny manipulations I can no longer do with my fingertips.

I was marveling at the fact that my hands aren’t sore after all that work, and then I realized that fewer bandages really do make a difference. I’m so used to having at least four or five fingers wrapped to protect sore ulcers that going bare is full of surprises.

Travel will undoubtedly cause me to revert to more digital protection. I have all my supplies plus antibiotics ready, just in case. But in the meantime, I am savoring the freedom and enjoying the feel of wonderful fabric. It’s been a long time since I’ve been able to sew this much, successfully—a real summertime treat.

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.