Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

travel

Course Correction

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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.

Interlude

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Our long weekend in Vermont already seems a long time past, but I have the pictures to prove that we really were there just ten days ago. I’ve never been to Lake Champlain, so we set our sites on Burlington, but also took in the beautiful farmlands and mountains nearby in our travels.

High points of our visit included a sail on the lake (the captain let me take the helm for a while, which is a topic for another post), the Lake Champlain Maritime Museum (where I learned about the very complex history of Benedict Arnold), the Shelburn Museum (yes, that really is a steamboat in the middle of the lawn), Fort Ticonderoga in New York (site of critical Revolutionary War battles), and the Von Trapp Greenhouse and demonstration garden in Waitsfield, Vermont (yes, those Von Trapps). Oh, and the food was truly amazing. 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.

Time for a Break

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No big travel plans for this summer, once again. But we’re trying to make the most of day trips. Two weekends ago, we spent a beautiful day in Rockport, Massachusetts. I hope you enjoy the view.

I’ll be taking a break from this blog next week, back on August 24. I hope you’re finding time to savor good weather, travel safely, and relax, too. 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.

Fear of Flying

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I subscribe to a great travel website, Scott’s Cheap Flights, that lists best airfares on reliable carriers for international travel. Lately, more and more destination deals are landing in my in-box, and Scott’s has consistently published flights with good cancellation policies during the pandemic.

But I’m still not ready to make any long-distance vacation plans. Not for this summer, anyway. I have my sights set on October, when I suspect the Delta variant will be better understood and any new rounds of restrictions will be in place. But who knows? I’ve read about even more variants emerging. The real question is whether the vaccines continue to hold up, which so far, they have, thank goodness.

It’s easy to fall into a default of staying put. As Delta surges in communities that have resisted the vaccine, and as vaccine rollout around the world remains much slower than in wealthier countries like the U.S., which have more resources to purchase doses, there are more chances for this opportunistic virus to morph into more resistant strains. We’re in the midst of a huge public health experiment, if you will, without consistent vaccine protocols and availability worldwide. The risks remain very real. I am convinced we will be living with some form of Covid for many years to come, though I hope it will eventually become endemic, just as the Spanish influenza pandemic of 1918 was the precursor of the flu we all have learned to live with. Vaccines are key.

But I also don’t want to become so fearful that I never get on a plane again. Obnoxious passengers who delay flights because they refuse to cooperate with mask mandates are an unpleasant prospect, certainly. Can’t let them control the skies. My strategy at present is to start researching a prospective trip in August for October, make sure I find flights and places to stay with flexible cancellation policies, travel only to locations where Covid rates are under control and good medical care is available, and to get comprehensive travel insurance.

I’ve made the leap of getting out in public without a mask where CDC and Massachusetts guidelines allow, have even begun eating inside in restaurants, again. It’s time to start dreaming of visiting far-away places, with reasonable precautions. We’re blessed with the resources to make this happen. Now I have to push farther out of my “comfort” zone and just do it.

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: Dariusz Sankowski

Time Warp

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Years ago, when our daughters were young, we used to vacation every summer on Block Island, off the Rhode Island coast. Back then, it was still affordable to rent a cottage for a week. The island was quaint, quiet, family friendly, with lovely beaches and nature trails to explore.

Thirty some-odd years later, other than real estate prices, which average in the millions of dollars, and very expensive rentals, the island remains in many ways frozen in time, with much open space still protected by the Nature Conservancy. As you approach on the ferry from Point Judith, the waterfront looks almost exactly as it did on our first arrival, when our eldest was barely three years old.

So it was on Sunday, when the four of us made a day trip to Block Island together for the first time in about ten years. There is something immediately calming as the ferry backs into its dock, to see all the familiar old hotels and the flag gaily waving atop the cupola of the National. We had planned a weekend on the Block last summer, and I’d rented a great house and secured our ferry car reservation, when, of course, the pandemic scuttled all that. While we couldn’t do a weekend this year, at least we could make a full day of it.

I’d originally hoped we could rent bikes to ride around to some of our favorite spots, but that was not to be. I haven’t ridden a bike in decades, and when I tried one out, I could not balance—something to do with inner ear issues that have been plaguing me for several years, now. Mopeds, which we’ve always avoided, turned out to be not the best option, either (we did check them out, but decided to pass).

Instead, we found the most affordable alternative: walking and taking taxis. Our first stop was the town beach, where we ate lunch that we’d brought along, rested, swam (Al never misses an opportunity to jump in the waves), and walked the shore. As my eldest said, it’s just relaxing to lie there and listen to the surf and the friendly chatter, not too crowded, not too boisterous. Just families of all kinds, having a good time.

Then we caught a taxi to what’s known as “the Spit.” This is at the northernmost tip, near the North Light, where ocean currents from either side of the island slap together as waves cross paths, foaming and spuming. It’s a long, challenging walk for me from the parking lot over rocks and sand, but well worth the trek. Along the way, we were treated to a pair of fledgling, fluffy grey sea gulls, peeping to their mother, who kept close watch as they wandered near the dunes, and at least eight seals playing in the surf, popping their long black heads above the water before diving gracefully out of sight. We also harvested handfuls of sea glass.

On our taxi ride back into town, our friendly driver, who came to the island 42 years ago for a visit and decided to stay, slowed down to show us a pair of breeding ospreys. Our very first visit to the island in 1991 occurred in the midst of Hurricane Bob, which passed directly over. Turns out our driver was in charge of one of the evacuation sites during the storm, at the medical center. We had found shelter for the day at the only school on the island. So, we reminisced. Far from scaring us off, the hurricane only endeared us more to this special place. It was on that trip, as well, that I realized I was pregnant with our youngest, and Al and I joked giddily about names for the baby starting with B.

Sitting on the top deck of the eight o’clock ferry back to Point Judith, after a delicious fish dinner, the ritual visit to the Ice Cream Place, and noodling about the shops, we said goodbye to the North Light winking over the Spit as the sky turned dusky. Halfway on the hour’s crossing, just above the slate blue mainland, fireworks sparkled.

Magical, once again, if just for a day, to slip back to simpler times, with my dear ones.

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.