Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

vacation

Gone Writin’

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For six-and-a-half years, I’ve been working on my novel set in World War I. And this year, I finally carved out five days to sequester myself near the shore and focus on what is now the eighth round of revisions. Here’s the view a short walk from my little Maine cottage.

More next week. I hope you all are pursuing your dreams, too. It’s never too late . . .

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.

And Then the Clouds Lifted

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Sunday was my 67th birthday—or, as my eldest put it, the 33rd anniversary of my 34th. Sixty-seven doesn’t seem old anymore. While my body certainly doesn’t work as well as it once did, pre-scleroderma, and my memory is no longer as sharp, I don’t feel old. Wiser, I hope. Seasoned, certainly.

To celebrate that milestone, and the fact that both Al and I are now fully immunized against Covid (at least the original version), we spent the weekend in the White Mountains of New Hampshire. Decades ago, when we were first married, and later when our daughters were very young, we used to camp there for our summer vacation. I haven’t been back, since.

My inspiration for the trip was to see the stars from the Kancamangus Highway, which runs through the White Mountain National Forest. There are no interfering lights at night, and I can still recall the spectacular view from a visit more than 30 years ago. The weather, however, had other plans. It remained overcast throughout our trip, the sun finally breaking through on Sunday afternoon as we drove home.

But the day’s diffuse light cast its own spell, subtly revealing details otherwise missed. From Laconia’s lake shores to the Lincoln Trailhead in the White Mountain National Forest, from the Cog Rail part-way up Mount Washington to the Basin off the Franconia Notch Parkway, we immersed in rejuvenating beauty. As I reconciled myself to a birthday mountainside view shrouded in mist, the clouds suddenly lifted and we could see 80 miles. The perfect gift, and metaphor, after a long, long year.

Enjoy . . .

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.

Calculated Risks

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One year ago this past weekend, I was in Philadelphia, visiting our younger daughter. The world was just shutting down, but I made a decision to go, anyway, after consulting with my rheumatologist about Covid risks. Knowing what we do now, I may have made a different assessment. But I’m profoundly glad I went, for both of us. I was careful, we had a wonderful visit, and it made the ensuing months of separation somewhat easier to bear.

Every day, throughout this very long year, we’ve all had to make choices about risk of exposure to this deadly virus. I am profoundly grateful that our family has avoided any serious cases of Covid (so far—please, God, may it stay that way), although at least one of our relatives, who is a physician, probably contracted the virus early on, even as tests back then were negative. I still wonder if the very odd virus I caught at the end of January 2020 after attending a large celebration may have been Covid, because it swept through my entire system, drained me out, and took me three weeks to recover. When I mentioned symptoms at the time to one of my health care providers, she had no reference point.

Since I’ve been working for myself from home for 11 years, now, the transition to Covid Time has been relatively seamless. I’m an introvert at heart and do not feel the intense longing for in-person social gatherings that others express, even as I empathize. I find shopping in stores stressful and the masking hard on my breathing, given my decreased lung capacity from scleroderma. So my solution has been to shop online when possible and get out in the real world primarily by taking walks. Restaurants are still out of the question, as far as I’m concerned, and after the new variants emerged, I postponed a haircut until I’m fully vaccinated. Zoom meetings and FaceTime have long been part of my repertoire and make a huge difference in feeling connected to family and friends. As for doctor’s appointments, I consider telemedicine to be one of the true silver linings of this awful year.

For a while, when the weather was still warm enough, I enjoyed visiting outdoors with family and friends, safely distanced. I look forward to starting that up again in coming weeks. We have traveled once, last November, to Cape Cod, for a Covid-safe weekend at a B&B near the ocean. It was uplifting to walk the shore, but meals were a hassle, and it was not relaxing for me. The stress of all the precautions dampened the joy I usually experience by getting away. Still, it was worth it to see what’s possible.

Now I’m one week away from my second Moderna vaccine, a miracle. My Boston Medical rheumatologist told me last week that I’m already about 80 percent protected, and I’m beginning to feel my fear of this scourge easing. Nonetheless, I will still continue to err on the side of caution, until we know more about the variants and how the Moderna vaccine does or doesn’t protect against what may be deadlier strains. I expect to need a booster sometime later in the summer, and will gladly get that, as well.

Then, and only then, will I feel safe enough to fully re-engage with the world. In the meantime, I’m starting to dream again about travel. A year after my last plane flight, it at last feels possible, 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. Please view Privacy Policy here.

Respite

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To say this past week has been intense and stressful would be a vast understatement. We have a new President-Elect, but the months between now and Inauguration Day on January 20, 2021, promise to be a rocky ride. So, as a public service, I offer you some soothing images of our escape to Cape Cod over the weekend. Visiting the ocean and environs always calms my nerves. Hope this virtual visit does the same for you. Enjoy . . .

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.

Souvenirs

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Staycation/home-decluttering week is over, and I’m back at my computer. And, of course, we didn’t get nearly as much done as I had naively included on my detailed to-do list. But we still made a lot of progress.

Each day, we tackled a different room, and each day Al carted out bags of recycling and give-aways. We made a huge donation of toys to a local neighborhood center that serves many families throughout our city. Both of our daughters have helped, either in person or via video chat, to determine what stays and goes. I’ve learned a lot about getting home improvement estimates from contractors, and we have one big project scheduled and another in the works.

In the process, I read through about fifty years of saved correspondence (writing letters is truly valuable), sorted old papers (no, I really don’t need my grad school graduation program), and sifted boxes of photos (old color prints stick together and are useless unless mounted in an album). Favorite finds include an edited copy of my college application essay, several priceless letters from my grandmother, and a series of old ID cards from my twenties, some of the only pictures I have of myself pre-scleroderma.

To break up the work, we took two afternoons off for day trips: on Thursday to the Fitchburg Art Museum—a real treat, our first such visit since the pandemic—and on Sunday to Allens Pond Wildlife Sanctuary, run by Massachusetts Audubon, on the southeastern coast. So, we finally got to the ocean this summer. The woodland hikes were beautiful, the shore, blustery and delightful.

On the way back to our car, walking along the rocky beach, I noticed a very smooth, gray rock and picked it up. It has a slight depression on one of its six sides. Another is slightly rounded. It feels soft, even though it’s hard. It fits perfectly in my hand. Maybe it was once a cobblestone in some old New England street. It’s been tossed and tumbled for who knows how long before it ended up at my feet. Its presence, beneath the bright, late August sun, spoke to me.

I brought it home to use as a paperweight. But there’s something about holding it that feels comforting. Just as I’ve sifted and sorted old stuff to glean the mementos that capture important personal history, I find something grounding in a rock that perhaps once supported thousands of feet and carriages and cars, that was discarded as useless, that spun through an ocean of turmoil, and is now source of beauty and calm. There’s a lesson to be learned there—and remembered—at the end of a pandemic staycation, when the world seems upside down.

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.