Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

travel

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.

Home Improvements

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If it weren’t for Covid, this week would have been abuzz with final trip preparations. We had hoped to go to Eastern Europe this summer to trace Al’s ancestry, with a side visit to see the town where my great grandfather Harry Herwitz lived. All that is now on hold (in one sense, a good thing, because the Herwitz family came from a town not far from Minsk, in Belarus, which, if you’re following the news, is in political turmoil over their election last week).

So, instead, we’re taking time off to work on our home. Last week we took care of some important electrical system repairs. There are leaking skylights to replace and a leak in my office roof (a converted porch), some painting to do, and a kitchen floor to refinish. We have some redecorating plans, too, which involve a lot of decluttering. Not exactly fun, but I’m hoping that by really focusing on all this stuff that we’ve put off for far too long, our home will be more organized, comfortable, and cozy.

Given that we’re all spending more time at home these days, it’s a worthy goal.

Over the weekend, I was listening to a podcast interview with Pico Iyer, who is a wonderful, thoughtful travel writer. He was speaking about how his travel has become more limited during the pandemic, and how it has brought him to appreciate his immediate surroundings much more. I have found myself doing the same, even on my walks around the neighborhood. Every time I walk, I see or hear something that I missed before—a purple door, a fairy garden, the chatter of katydids. These are welcome surprises.

We’ve had some unwelcome surprises as we’ve begun our home improvement projects, including the discovery of a main electrical cable with completely exposed wires due to rotted insulation. But I’m very grateful that we found out, and it’s now been replaced. That’s what happens when you start to pay attention to what’s been right under your nose all along.

So, I will be off next week, exploring the familiar with heightened focus, maybe taking some day trips, also. I hope you, too, are able to make the most of these last weeks of August in Covid Time. Back in September. Be well.

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: Debby Hudson

It’s Always Sunny in Philadelphia

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This past weekend, I flew to Philadelphia to spend a long-planned weekend with my younger daughter. We had originally intended to enjoy the Art Museum, dining out, and some quality mother-daughter time, to mark her birthday next week. I was also going as her support for a medical diagnostic procedure on Monday. But with the intensifying spread of COVID-19, the decision to travel was complex.

Driving to Philly from our home takes a good six hours. The flight takes under an hour from our local airport, which is a ten minute drive from our house. Under normal circumstances, it’s a no-brainer.

But flying is now fraught with worries about the risks of picking up the coronavirus in public spaces—and spreading it to others. My daughter was quite concerned for my health and willing to postpone my visit. I, however, was not willing to give up so easily.

Ultimately, after conferring with my long-time rheumatologist about my risks of dealing with the virus, and given that I have no coronavirus symptoms, nor have I knowingly come in contact with anyone who has traveled abroad to hot spots, I decided that I would make the trip. I took extra precautions, wearing latex gloves in the airport and on the plane, wiping down my seat belt, arm rests and head rest with disinfectants, not using the tray table. The flight is on a small American Eagle jet, and it was only a third full both ways, so no trouble staying three to six feet away from fellow passengers. No one was notably coughing.

I kept a wide berth from other travelers as I walked through and waited in airports. My daughter picked me up in Philly on Friday, and I sat a safe distance from my congenial Lyft driver on the way to the airport Monday afternoon. (I gave him a good tip, because business is understandably slow.) Al was waiting for me when my flight arrived back home.

Over the weekend, we had a very meaningful mother-daughter visit, with some important conversations about what’s happening and what could happen, a talk that could only occur in person. We ate in, took a sunny walk around the Art Museum (which was closed) and along part of the Schuylkill River Trail, did some sewing and crafts, and binge-watched Netflix series. I took her to her medical appointment, and, thankfully, all went well. Given all the uncertainty about travel in coming weeks and months, it was all the more important to visit now, when it was still possible.

Back here in Massachusetts, schools and universities are closed, restaurants and bars shuttered except for take out, and many people are now telecommuting. Public gatherings are restricted to no more than 25 people. My synagogue is closed, though conducting daily minyan via Zoom. My dentist is closed except for emergencies over the next few weeks. My weaving studio is on hiatus. My German classes are canceled this week and shifting to online next week. My gym is closed. Grocery stores and pharmacies are exempt from these restrictions, so far. Al’s work has shifted to a hybrid of work-from-home and in-person visits to his social work clients. I am well-accustomed to working from home, so my daytime schedule is status quo. Others are not so fortunate.

I’m sure that you, Dear Reader, are experiencing similar disruptions. None of us knows what is next. All I know is that I’m glad I went to see my daughter while I still could, and I’m glad I’m back home.

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.

Yellow Roses

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On Monday, Al and I celebrated our 35th wedding anniversary. Actually, we started celebrating over the weekend, with Shabbat blessings in synagogue, a great performance of Pulitzer-nominated The Wolves on Saturday night, delicious Sunday brunch at a local bakery cafe, followed by a tour of the stunning Bauhaus historic home of Walter Gropius and family, a quick visit to special exhibits that deserve more time at the Worcester Art Museum, watching a quirky, funny Albanian film called Two Fingers Honey, and dinner at a cozy neighborhood Italian restaurant. Plus a special dinner on our actual anniversary Monday night. And we have still more plans for next weekend. Nothing like playing tourist in your own backyard with your best friend.

Indeed, we’ve now lived more than half of our lives together—which is astonishing, when I stop to think about it.

How can you really know, when you first marry, whether you’ll be able to keep your relationship fun and surprising, let alone weather all of life’s inevitable storms, and discover that your love for one another will continue to strengthen and flourish?  Honestly, you can’t. Intuition, experience, mutual attraction, a pinch of luck—all are factors, but not determinants. I just know that the first time Al showed up on my doorstep, he surprised me with a dozen yellow tea roses. No one had ever done that before. And the first time he gave me one of his big bear hugs, I felt safe and peaceful.

All these years since, through many, many challenges with health, family, jobs, and more, he’s remained that same steady source of calm, security, optimism, and wonderment. He has the most generous heart of anyone I have ever met, infinite patience for all the mishegas of my scleroderma, and an endearing curiosity and playfulness that can push me out of my comfort zone, but often for the better. Even when he drives me crazy, and I, him, we always manage to work it through and come out stronger.

We’re a lot grayer than those two young adults who smile so blissfully in our wedding portrait. It was good that we didn’t know what lay ahead, starting with the discovery, shortly after returning from our Cape Cod honeymoon, that I had a serious autoimmune disease, with scleroderma being the ultimate diagnosis three years later. All that seems ancient history, now.

The best definition I’ve ever heard of a good marriage or partnership is to be each other’s oasis. Looking back over the past 35 years, I think we’re there. Whatever comes next, I am most grateful.

P.S. This marks my 400th blog post on Living with Scleroderma. How fitting for this to be the subject! To all of you, Dear Readers, thanks for following along.

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.