Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Rainbow Fingers

· · 2 Comments

On Sunday afternoon, I was sitting in my home office, making plans for the week, when I leaned back in my chair and glanced at the ceiling. There were dozens of rainbows, scattered everywhere. I looked down at my desk and saw more rainbows, dancing across my hands.

The source was the mid-afternoon December sun, fracturing through my crystal pen holder. I tried to take a picture of my left hand with my right, holding my phone. But this was an impossible feat, given current ulcers. So I grabbed my small tabletop tripod, rigged up the camera, and caught the image, above . . . though not without some difficulty, because the Earth was turning and the sun’s angle was shifting, even within seconds.

Change is the only constant. Beauty is fleeting. But if you pause to pay attention, glorious moments abound.

May your day be full of rainbows.

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.

What I’m Grateful For

· · 2 Comments

What a difference a year can make. Last Thanksgiving, our younger daughter couldn’t come home from Philly because of Covid risks. We had a small celebration with our eldest, who lives only an hour away. But the holiday was overshadowed by all the uncertainty and infections and deaths wrought by the pandemic.

This year, we’re looking forward to all four of us being together on Thursday and to seeing extended family over the weekend. We’re all vaccinated and boosted, so I’m much more relaxed about it than I was last November.

So, of all that I’m grateful for this holiday—our family, dear friends, a nice home in a peaceful neighborhood, a supportive community, the ability to work for myself and pursue my own writing, relative good health despite scleroderma, and more—the thing I am most grateful for this Thanksgiving is the Covid vaccine.

It is an absolute miracle. It is worth the temporary side effects. It prevents serious illness. It saves lives. It has protected me for many months, now. I fear how I would have fared during the Delta wave this summer without it. As cases again surge in Europe and here in the U.S., primarily among those who are not vaccinated as colder weather drives us indoors, I profoundly hope that more people will realize the incredible gift of this scientifically sound and safe vaccine, and get protection for themselves and others around them.

This is my 500th post on Living with Scleroderma. I could never have imagined, when I started this blog on January 3, 2012, that I would be writing about surviving a global pandemic nearly ten years later. Just typing that sentence is mind-boggling. We can never know what is coming next. My hope for you, Dear Reader, is that you make the most of each and every day, whatever it brings—and bring your best to it. That’s really all that any of us can ever hope to do.

Be well, and happy Thanksgiving to all who celebrate.

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: Eric Tompkins

Autumnal Perfection

· · 4 Comments

Sunday was one of those perfect, crisp fall days here in Massachusetts, just right for a good walk. So I took advantage of the weather to follow the trail around a drumlin nearby, one of the hidden gems of our city’s parks. Within a few minutes, you can immerse yourself in woodland. Even as car horns and swooshing traffic penetrate, the sounds of the city become more muffled the farther you climb the hill. My personal challenge is to make it all the way up the circular trail without stopping—good aerobic exercise. Trees along the way to the park, up the hill and down, provided inspiration. I hope you enjoy the view!

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.

Hardening Off

· · Leave a Comment

On Monday morning, steam clunked through our radiators. The sugar maples on our street are beginning to tinge yellow and orange and shed a few leaves. The days grow shorter. Fall is officially here.

My bonsai has been flourishing all summer, but as temperatures begin to drop, I need to learn how to prepare it for fall and winter. I’ve found some instructions online. Not surprisingly, you begin to limit food and water, still ensuring that it never dries out, but restricting intake. Like all trees, it has to harden off for the colder, darker months of the year here in the Northern Hemisphere. Time to reduce stress from cooling temps and allow it to acclimate.

I feel the approaching cold, too. Still wearing sandals for as long as I can, but starting to acclimate my feet to enclosed shoes again. I’m going through my sweaters, adding more layers as needed. I do not look forward to winter coats and boots and gloves and scarves and hats, but I will make the most of it. I ordered some beautiful Italian wool to sew, and I’m contemplating projects.

Soon the brilliant New England fall foliage will entice, as trees shut down photosynthesis, shed their leaves, and transfer sap to their roots, saving energy for the cold months to come. That, at least, is a gorgeous way to transition to weather that triggers my Raynauds.

And I will adjust, too, as I always do. Carpe diem.

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.

Course Correction

· · 2 Comments

Our long August weekend in Burlington, Vermont, already seems like months ago. But I’ve been thinking about one of our adventures, a two-hour sailboat cruise on Lake Champlain, ever since.

It was Friday afternoon, hot, humid, perfect weather to get out on the water. A family of four sat at the bow, beneath the jib, and Al and I sat aft, behind the mainsail. When I mentioned to our captain how much I love sailboats, he said, “Would you like to sail it?”

Now, it’s been about 40 years since I’ve taken sailing lessons, but I figured he would be right there, so I agreed. And that is how I found myself taking the helm, gripping the stainless steel wheel, and wondering what exactly I had gotten myself into. “Relax,” said the captain. Sure, I thought, easy for you to say, but I really don’t want to capsize our sailboat with that nice young family up front.

He told me to turn the wheel back and forth to see what happened. As I moved the rudder, the boat shifted direction slightly to left or right, with a momentary delay. It was as if wind and current had to negotiate a bit before our direction was determined. For the next twenty minutes or so, I did my best to sail us safely out of the harbor between the breakwaters and into the huge lake, focused on a cleft between two mountains on the horizon, as our captain instructed.

It was not easy. Wind and current competed constantly, and I had to make many small adjustments of the rudder to keep us on course. To me, it looked like we were zigging and zagging through the water, but the family at the bow seemed to be enjoying themselves, and the captain was not in the least concerned. Al just enjoyed being along for the ride.

When I handed back the helm, the captain attached the wheel to some cables connected to an internal computer, set the course, and the boat effectively sailed itself. But the computer constantly adjusted the wheel back and forth, just as I had, to balance out the tug of current and push of wind. So that made me feel better.

Staying on course is never a straight line.

Every moment of every day, we make choices. We’re buffeted by many options, distractions, demands on our time and attention. It’s easy to go on autopilot in our daily routines, following the familiar course of waking, grooming, meals, work, school, chores, homework, childcare, exercise perhaps, maybe pursuing a hobby or reading a book, Zooming, or just collapsing in front of the TV or computer before bedtime.

As I was sailing on Lake Champlain, gripping the helm, I could feel the tug and pull of water below and wind above. I was acutely aware of how my hands on the wheel controlled the rudder and direction of the boat, how turning it a little too far to left or right would steer us off course. I had to pay attention.

It was not relaxing. And I couldn’t maintain that level of focus for more than twenty minutes on a day when I wanted to just be on vacation. I don’t think it’s realistic for anyone to be fully alert for every waking minute—or even healthy, for that matter. Witness the burnout of our front line workers battling Covid, 24/7, throughout the pandemic, who so desperately need rest and recuperation.

But I do think there is a lot to be said for being more mindful of our actions, how small actions can add up to big ones with significant consequences, for better or worse. For me, and for Jews around the world, today is Rosh Hashanah, the Jewish New Year, a time for introspection about the year past and reflection about how to do better going forward.

It’s been a tough year, navigating through the pandemic, which seems endless. I’m setting my sights on trying to be more conscious of the pushes and pulls that can throw me off, the ways words and worries steer and jostle my actions and those whose lives I touch, and how, with a little more care, a little more attention, I can chart a better course—not only for myself, but for others, known and not yet known.

Sail on, Dear Reader, sail strong.

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.