Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

At Summer’s End

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Labor Day has now passed, alas. The school year has already commenced in our fair city. Once again traffic is heavier on the Mass Pike when I drive into Boston for medical appointments and other events, always a sure sign that vacation season is over.

Time for sweaters and jackets and warm pants. I still leave the bedroom windows cracked at night, but not as wide open as in recent weeks. The heat has not switched on, yet, but it won’t be long before I’ll need it to get out of bed in the morning.

I won’t miss this summer’s sweltering heat and humidity. But I will, as always, miss the comfort of being able to walk outside without multiple layers of clothing. I won’t miss blasting air conditioning in public spaces that triggers my Raynaud’s and dries out my eyes. But I will, once again, miss the long hours of sunlight and the ease of wearing sandals.

New England has been my home for more than 40 years, now, and I still love living here, despite the prospect of another cold winter. I will adjust, as always, to the seasonal shift into fall. I always revel in October’s colors, the stark light of late November, and the pristine blanket of winter’s first snowfall.

In praise of temperate climates, here’s a link to a recording of Antonio Vivaldi’s The Four Seasons. Even as I’ll grumble as sunlight dwindles, there is still much to be grateful for.

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: zero take

As the Leaves Begin to Turn

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It always surprises me this time of year to see leaves already dropping from the trees on our street. I mean, come on, it’s still technically summer here in New England! But the days are growing noticeably short, and less sunlight means less photosynthesis. So, yes, the leaves and other green plants are shifting into autumnal mode.

Al and I took a short hike on Sunday afternoon along a trail by a mill pond for a long-abandoned cider mill not far from our home. It was a bit too buggy for my taste, but the foliage was lovely and the air was moist and rich with the scent of forest duff. Here are a few photos. Enjoy (without the mosquitoes)!

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.

Back on the Block

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It was perfect weather for the beach on Sunday, sunny, in the 80s F, and given that we hadn’t made it to the Atlantic this season, we grabbed the chance for a day trip to Block Island. An hour’s ferry ride from the Rhode Island coast, it was our favorite vacation spot for years with our daughters, until everyone else discovered it, too, and the rents became ridiculous.

So Al and I try each year to get there on a Sunday. As luck would have it, however, given the beautiful weather, a lot of other folks had the same idea. Even as we left with plenty of time to catch the 11:30 ferry, we hit beach traffic that kept adding minutes to our arrival time. I took a GPS-recommended detour, only to have traffic get worse. Needless to say, it was not a relaxing arrival. When we finally got to Point Judith, there was no parking available, so we took a chance of parking in a four-hour spot and risking a ticket.

As it turned out, I had managed to read the ferry schedule backwards—the 11:30 ferry was the return ferry from Block Island—and the ferry to Block Island was actually departing at Noon. We got to the top deck of the very crowded boat with about 10 minutes to spare.

The island was hot and crowded. Still, we made the best of the afternoon, grabbing a good lunch at Persephone’s and then walking to the Town Beach, where we rented chairs and an umbrella. The tide was coming in, so when we took our walk up and down the shore, waves rushed and splashed. My pants got soaked, but I didn’t care, because the sand was cool and the surf, refreshing. And given the heat, my pants dried out quickly. We had our favorite dinner at the Beachcomber, Al got his ice cream at the Ice Cream Place, and we made the 6:15 ferry back, once again with about 10 minutes to spare. When we got to our car, well past a row of similarly parked cars with orange tickets on their windshields, ours had not been tagged. Hurray!

But the highlight of the trip came, surprisingly, on the ferry ride back. We were sitting on the top deck, once again, because there was no room on the other two decks. All of a sudden, people on one side started pointing and raising their phones to take pictures, standing on the benches to get a better view. I was able to get a glimpse of the phenomenon—a pod of dolphins, maybe a dozen or more, leaping through the water, heading toward the island. Everyone was thrilled, like a bunch of little kids. It was great. In that one moment, we were all in awe of Nature’s wonders. Everyone was smiling.

I’ve never seen wild dolphins before. Glorious. May your week be full of magnificent surprises.

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.

Dappled

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There’s a word in Japanese for the light that filters through trees:

Transliterated as komorebi (kō-mō-reh-bee), it is made up of the Japanese characters for tree, leaking, and sun—meaning, literally, the sunlight that leaks through trees. Komorebi refers to the ever-shifting way that sunlight filters through tree branches and boughs, creating dancing patterns on the ground and illuminating the backside of leaves. It’s one of my favorite things to discover when I walk outdoors. And I love the fact that there’s a Japanese word to capture that sensation.

So, when Al and I took advantage of perfect summer weather on Sunday, we went to Garden in the Woods, a 45-acre refuge for native plants in Framingham, Mass., and I tried to capture komorebi with my iPhone’s camera, as well as some delicate plants—and, of course, some turtles. It made for a lovely, peaceful afternoon. Here’s what I found. 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.

Down to Three

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One of the best things about summer is that my finger ulcers tend to heal. For months I was dealing with as many as six bandaged fingers, changing those bandages twice daily. It took at least a half-hour each time I changed dressings and used up a lot of bandages.

Now, happily, I’m down to three: both thumbs, which are always a problem no matter what time of year, and my right index finger, which is nearly healed up. The thumbs are an issue because they contain so many calcium pits. If you look at an X-ray of my hands, each thumb contains a long chain of calcinosis. The index finger had a big piece of calcium that finally popped out about a month or so ago, then another fragment emerged last week. But it’s closing.

All those hot, hot days in recent weeks have been really helpful, even if the heat is exhausting. Thank goodness.

I see the team at our hospital’s Wound Clinic about every two months, and they were impressed. They also gave me a kind of crystalline medical grade honey it to try. It helps to break down the thick tissue that forms on the inside of my thumbs. You just have to be judicious using it, because I have found in the past with medical grade honey that it can make things worse if you overdo it. But it sure smells good.

So, here’s to summer. I hope those of you in the northern hemisphere are enjoying it, despite the wildfires, intense storms, and heat waves. We need to savor it while we can.

Image: Alexander Mils

And now for some shameless self-promotion. . . . My sincere thanks to all who participated in the cover poll for my forthcoming novel, Line of Flight. More than 400 people voted, and this cover won by a large margin. I’m thrilled, because it was my favorite, too.

And now I’m pleased to announce that my book is available for pre-order. It publishes on November 17, this fall. Pre-orders help the book to get higher rankings on online seller sites, so more people find it. Here are the details and links for pre-orders.

Thanks for your encouragement and support!

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.