Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Calculated Risk

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This Tuesday I have my first in-person visit to Boston Medical Center in about a year. All my appointments since last winter have been via telemedicine or phone. My new rheumatologist told me when we spoke over the summer that he’s now trying to alternate virtual and face-to-face meetings with patients unless circumstances make an in-person visit too risky. Given the pandemic’s surge, I was expecting this one to be telemed once again, but not so.

Instead, I’ve received a series of texts and emails with a Covid questionnaire (all my answers to risk and exposure were ‘no’), instructions about coming alone (unless I was accompanying a child or a disabled or elderly patient), and to remember my insurance cards (of course).

What I don’t know is this:

Will they give me a new mask and require hand sanitizer when I arrive? I assume so. This is standard at every other medical practice that I visit. I hope they won’t prevent me from wearing my protective gloves.

Will there be a limit on number of people in the elevator? The Rheumatology Department is on the seventh floor, and the elevators in the medical building were always crowded in the Before Times.

How many people are scheduled for the waiting room at a time? Appointments often run late. There’s a big open corridor outside the office with large glass windows overlooking the BMC complex. The waiting room is shared with another department. Can I wait in the corridor instead of the waiting room? Will someone come to get me?

I will bring some cleaning supplies along in case I have to use the public restroom. At least on the 7th floor, the restroom doesn’t get too much traffic, but BMC is still a busy place, and I can’t take any chances.

Is it worth it to go in person? I could have requested a virtual appointment. But I actually want to see my rheumatologist again. We only met once, when my long-time physician, Dr. Robert Simms, was transitioning to retirement. It’s time to have a real visit. I really like and respect my new doc, and we need to get to know each other better.

So, I will take the calculated risk. Life is full of such decisions these days. Maybe, by the next appointment, I’ll have been vaccinated already. God willing.

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: Aziz Acharki

Thankfully

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Thanksgiving last Thursday was for us, as for so many, a shadow of celebrations past. But it was still lovely and meaningful, in its own way. Our eldest daughter, who also lives here in Massachusetts, was able to join us, even as our youngest had to stay at home out-of-state. Still, we enjoyed an extended family Zoom and watching a movie together-while-apart in the evening. No substitute for in-person, but I’m grateful that we all stayed safe. I cooked a vegetarian, gluten-free feast, with sous chef assistance from our daughter, including this excellent recipe from The New York Times for “Roasted Cauliflower Gratin with Tomatoes and Goat Cheese,” which I highly recommend.

The Times on Thanksgiving also featured a wonderful compilation of reader contributions of six-word gratitudes. Here are ten of my own:

COVID-19 vaccines: Light at tunnel’s end.

All still Corona-free. Knock on wood.

Okay, otherwise, with no digital infections.

Supermarket cashiers risking health for us.

Ample food. Loving family. Roof overhead.

Longer days in just three weeks.

Virtual, imperfect, but meaningful Zoom togetherness.

Good neighbors who wave behind masks.

Local election officials who defend democracy.

You, Dear Reader, for being here.

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: Adam Nieścioruk

Constancy

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My mother used to have a saying, “This, too, shall pass.” I suppose it calmed me when I was a child, but as a teen and young adult, it used to drive me crazy. As is the way with mothers and daughters, I took this as her default dismissal that she didn’t take my feelings seriously. Looking back, I suspect that on some occasions, she was speaking from the wisdom of experience, and on others, she just couldn’t deal with my angst du jour, legit or not.

Lately, however, those words have resurfaced in my mind’s echo chamber. As the pandemic surges and the infection rate rises exponentially, as our nation roils in the election’s aftermath, I have found some comfort in my mother’s saying. After all, she lived through Weimar Germany and the rise of Hitler, transplantation to a new nation with a different language and culture, World War II, the McCarthy era, the Cuban Missile Crisis, civic disruption in the ’60s, Watergate . . . the list goes on.

We were most fortunate, in the midst of all that 20th century strife, to enjoy a safe and comfortable middle class life. And I am very grateful, now, to have the luxury of being able to reflect on our nation’s turmoil without experiencing a major disruption of illness or unemployment or the risks of financial ruin in my own family. This is not the case for all too many of my fellow citizens, which is both tragic and utterly unacceptable.

Nonetheless, especially when I go outside, I find reassurance in the natural rhythms of the world, that there are constants that continue to ground us all. The trees are mostly bare, now, in my neighborhood, their brown and crumbled leaves raked into huge mounds that line our streets. The air is crisp; the light, November stark. It is a comfort, even as the days grow short again, to know that the earth still spins on its axis and the seasons, albeit altered by a warming planet, still turn.

Last weekend, as we walked the Cape Cod National Seashore, I found peace in the ocean’s crash and susurrus, the crunch of sand beneath my sneakers, a gem of green sea glass. On Saturday night, we returned to the beach and gazed at the stars. There were Orion and Cassiopeia, the star cluster Pleiades in Taurus, and the russet pinpoint of Mars, all where they always are.

There were days in the past week when I was feeling so anxious about the power of false narratives that I wondered if my health would be affected. Then I finally told myself I simply couldn’t keep going down that rabbit hole. So, even as I still doom scroll all too often, I take my walks, and I read about Nature, and I remind myself, even as none of us knows what is on the other side—this, too, shall pass.

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: Shelby Deeter

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.

As We Wait

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There’s a chill wind blowing as I write on Monday afternoon, and it feels more like January than the first week of November here in Massachusetts. We had six inches of snow last Friday, enough to pull down some tree branches that are still in leaf. But we made the most of it, and built a snowman. It’s still barely standing.

It was Al’s 70th birthday on Halloween, the kind of milestone you want to mark with a big bash. Instead, I made him a half-hour video montage with tributes from family and old-time friends, we had a Zoom family party, and an elegant take-out meal plus a delicious cake with chocolate mousse and raspberry preserve filling. The day felt truly festive, despite pandemic restrictions. Al, being Al, delivered candy treats to all the neighbors because there was no trick-or-treating in our fair city this year.

On Sunday, we at long last had our lower roofs repaired, a project that had been stalled for two months, first by weather, then by our Covid scare. No more leaks in my office every time it rains, or in the kitchen around the very old skylights. The new ones are solar-powered and close automatically when it rains, if we forget. I’m grateful this is finally done and we’re ready for winter.

The sky is a brilliant blue, and the sun is shining.

Whoever wins our national election, I must believe that we’ll find our way through. We have many searing problems to solve, a pandemic to overcome, far too much fear and misunderstanding. But there is also a wellspring of love and good will in this country. I’m praying for our better angels to prevail, for the ebb and flow of daily life to be all that’s remarkable, once again.

If you have not yet voted, please do so before the polls close. Be safe, stay sane, hug your loved ones, be kind to your neighbors. We won’t know the answer for a few days, or perhaps longer, until all the ballots are counted. That’s okay. Every vote matters.

Peace.

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: Jennifer Griffin