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Reflections on the Messy Complexity of Chronicity

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vacation

Orange Moon

Evelyn Herwitz · September 1, 2015 · 1 Comment

With August now behind us, signs of fall are everywhere. On recent walks I’ve noticed that our neighbor’s sugar maple is just beginning to shed a few leaves. Nights are cooler. It’s already getting dark by 7:30.

photoBut I’m not quite ready to let go of summer. So it was a gift on Sunday—a beautiful, sunny, warm day—that Al and I made it to one of our favorite beaches on Block Island, just off the Rhode Island coast.

As a child, I loved to swim in the ocean. Our family would vacation on Cape Cod, and I’d always beg to go to Nauset Beach, part of the National Seashore on the Cape’s eastern coast. There I would play in the waves until I turned blue and my teeth chattered. Nothing could stop me from swimming and body surfing.

Decades later, I still love the ocean, but it’s been many years since I could get in the water. Most of the time, it’s simply too cold and not healthy, given my Raynaud’s. But even when the water is warmer (yesterday at Block Island it was 73ºF, pretty comfortable for the Atlantic up here), I can’t risk immersing my finger ulcers in the sea. Too high a chance of infection. One year, when the girls were young, I tried fastening latex gloves around my wrists with duct tape so I could swim, but the water still seeped in.

So I’ve learned to appreciate the ocean in other ways. While Al swam yesterday, I finished reading a novel. We took a long walk up the beach, examining pebbles and rocks, searching for sea glass. I dipped my toes in the water. I took some pictures. I listened to the mesmerizing sound of the waves. And I breathed in the wonderful moist air, which does wonders for my too-dry nose and scarred lungs.

The water is an endless source of fascination, ever changing. Then there are all the birds to watch. One particularly bold—or indifferent—white-and-gray herring gull strutted past me as I read, its yellow eye scanning the sand for leftovers, close enough for me to touch it if I’d dared. (I didn’t.)

As the afternoon shadows grew long, I bundled up in the various layers I’d brought—sweater, sweatshirt, blanket, hat. We left the beach, reluctantly, around 5:30, and walked back into town to find a place to eat dinner. It was still warm enough, away from the shore breeze, to dine outside.

Later, on the ferry back to the mainland, we sat on the top deck and watched the dark shapes of the island’s dunes slip by in the night. Even with the breeze created by the ferry’s forward motion, I was able to stay up top and enjoy the stars. As our boat neared Point Judith, we turned around to see the nearly full moon high over the horizon, casting a glistening shadow across the water. It was huge and orange, the color of summer sunsets and fall harvests.

I couldn’t have asked for a better ending to a great summer.

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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: managing chronic disease, mindfulness, Raynaud's, resilience, Sjogren's syndrome, vacation

Theory of Relativity

Evelyn Herwitz · August 11, 2015 · 2 Comments

Just over two weeks ago, we were in Ireland. How can that be? I feel as if a month has passed, already.

IMG_0438It’s so hard to hold onto that transformative sense of being elsewhere, once you’ve re-immersed in your everyday life. We have pictures and stories of our travels, and we’ve been sharing with friends and family, but with each day that passes, the details are a little less sharp. The minutiae of the moment clamor for attention.

Part of the reason the trip seems so distant is that I was in Chicago on business last week. This worked out better than expected, given that a mere seven days separated our European journey from my flying halfway across the U.S. on my own. After we had traveled all over Europe in two weeks, going to Chicago and even switching hotels once in three days was a snap. I was so relaxed about packing and flying that I surprised myself. Usually, I’m stressing about every detail. This time, I hardly did any preparation in advance. And I didn’t have any health complications along the way, thank goodness.

So even if our vacation seems like a long time ago, the travel experience has changed me. I know I can manage a lot of details on the fly. I know I can manage a health flare while far from home. I know I can do a lot of schlepping, get very tired, but recharge and keep going.

All of this is very encouraging. I would love to see more of the world before I really am too frail to travel.

In the days leading up to our Europe vacation, I felt as if I were jumping off a cliff. What if I couldn’t handle it? What if one of us got really sick on our journey? What if we lost our passports or they were stolen? On and on.

I’ve had so many episodes of strange, scleroderma-related health problems–infected ulcers, a resorbing tooth, spontaneous cellulitis–while on short trips not far from home, that I really didn’t know what to expect. The fear of illness in a foreign country has kept me from considering a bigger trip for years.

I prepared as best I could for all contingencies, including buying a good travel insurance policy that covered us for serious health complications. I carried an ample supply of antibiotics, which paid off when I did, indeed, suffer a bout of cellulitis in my right foot at the beginning of our travels. I planned our itinerary to build in opportunities to rest (not enough, but at least I tried).

In the end, I learned that I’m stronger than I thought. And I also discovered that a half-week business trip in one city is easy compared to a two-week vacation in seven. It’s all relative–a matter of experience, testing your limits and finding out what you’re really capable of, as opposed to what you’re afraid you cannot do.

Onward.

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.

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Filed Under: Body, Mind Tagged With: body-mind balance, cellulitis, managing chronic disease, resilience, travel, vacation

Postcards from Europe

Evelyn Herwitz · August 4, 2015 · Leave a Comment

Five countries, seven cities, 14 days. We’ve been home more than a week, but the memories of our trip through Europe resonate deeply. From Berlin to Achern, Germany; from the World War I battlefields in the Vosges Mountains of Alsace to a boat ride along the Seine in Paris; from beautiful Brugge to Flanders Fields, Belgium; from the Imperial War Museum in London to the resting place of Lusitania victims in Cobh (pronounced Cove), Ireland–we traveled by plane, train, bus, subway, car and foot to do research for my novel in progress, set in 1915 during the Great War.

And we made it. I was exhausted, yes, by all the travel. I dealt with a bout of cellulitis in my right foot at the beginning of the trip (thank goodness for antibiotics). I didn’t get enough sleep. But it was magnificent. Al and I found our way, with the help of many angels, to each destination, were blessed with the hospitality of good friends, stayed in wonderful accommodations on a budget (highly recommend AirB&B if you haven’t tried it), ate great food, and enjoyed the trip of a lifetime.

We’re grateful we could go. And dreaming of our next adventure. Here are just a few highlights . . .

Berlin balcony
Berlin balcony
Baden-Baden, Germany
Baden-Baden, Germany
Trenches  at Hartmannswillerkopf, Vosges Mountains, Alsace, France
Trenches at Hartmannswillerkopf, Vosges Mountains, Alsace, France
Storks in Munster, France
Storks in Munster, France
Cathédrale Notre-Dame de Strasbourg, France
Cathédrale Notre-Dame de Strasbourg, France
Cathédrale Notre-Dame de Strasbourg, illuminated at night to show original colors
Eifle Tower, Paris, from the Seine River
Eiffel Tower, Paris, from the Seine River
Six flights up to our walk-up in Paris
Six flights to our walk-up in Paris
Medieval buildings in Brugge, Belgium
Medieval buildings in Brugge, Belgium
Poppies in Flanders Fields, Belgium
Poppies in Flanders Fields, Belgium
London, West End, near Ealing-Broadway
London, West End, near Ealing-Broadway
Parliament and Big Ben from the South Bank, London
Parliament and Big Ben from the South Bank, London
Our first view of Ireland
Our first view of Ireland
In Cobh, Ireland
In Cobh, Ireland

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.

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Filed Under: Body, Hearing, Mind, Sight Tagged With: resilience, travel, vacation

Fly Away

Evelyn Herwitz · July 14, 2015 · Leave a Comment

When we moved into our home 16 years ago, one of Al’s brothers gave us a squirrel-proof bird feeder as a house warming gift. Last month, we finally hung it on the Norway Maple in the back yard.

Our delay was due, in large part, to Ginger. A frustrated huntress her whole life (she was, after all, a Golden Retriever), she would have had conniption fits with so many birds in the back yard. Now, with her gone, it’s time to give wildlife its due.

birdsAnd so, my morning’s entertainment, as I eat breakfast, is to watch the birds at the feeder. This is, without question, one of the best antidotes to stress that I have ever discovered. For me—not for the birds.

In fact, our backyard feeder has become quite the point of contention. A blight of house sparrows (yes, “blight” is the actual term for a group of them, or, if you prefer, a “humiliation”) has taken over the feeder. I had no idea they were so aggressive. They have batted away chickadees and house finches and scared off nuthatches. No cardinals have visited the feeder yet, despite the fact that we’ve filled it with black oil sunflower seeds (which house sparrows supposedly don’t like—not true). Morning doves, being ground feeders like their pigeon cousins, clean up what drops below, along with a chipmunk.

I can vouch for the manufacturer’s promise that the feeder is squirrel-proof. One particularly inquisitive gray squirrel has tried numerous ways to get at the seeds (I know there’s something in there!) by climbing all around it, and even going so far as to grab and pull down the springy perch. But so far, it hasn’t found a way to get the goods (though I must say, as a former psych major, the squirrel’s attempts are a fascinating study in learning styles).

The feeder’s hopper is full. When we return from our vacation at month’s end, I wonder how much will be left and if the sparrows will still dominate. Maybe the house finch, with its beautiful scarlet head feathers, will have finally told them off. Either that, or we’ll have a lot of house sparrows nesting in our eaves.

Meanwhile, as I make final preparations for our European travels, checking off items on to-do lists that seem to propagate over night, trying to plan for every possible health-related contingency and knowing that I will just have to deal with whatever happens, scrambling to finish off work for clients and my sewing and last-minute purchasing, I will continue to watch the birds and cheer for the house finch, which grabbed a few seeds while the sparrows weren’t looking.

If all goes according to plan, as you read this, we will be in Berlin, the first of seven cities on our complicated itinerary that takes us from Germany to France to Belgium to England to Ireland. All in the name of research for my novel and visits with friends and, yes, adventure.

Time for a break from blogging. Whatever your own summer plans, I wish you well. See you in a few weeks.

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.

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Filed Under: Body, Hearing, Mind, Sight Tagged With: body-mind balance, resilience, travel, vacation

Spring Tide

Evelyn Herwitz · April 14, 2015 · 2 Comments

Passover is over and the endless winter has actually ended, with only a few stubborn patches of snow remaining. On Sunday, with temperatures hovering in the ’60s, Al suggested we go to the beach. “Great idea!” I said.

So we packed a lunch for the drive and set out for the South Shore, to a coastline we had never explored along Buzzard’s Bay. It was nippy by the water, and I needed all the layers I brought in the car, but so wonderful to see the ocean again. There’s nothing like sea air to clear the senses. Summer can’t be too far away.

Please join me on our hike at Nasketucket Bay State Reservation. . . .

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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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, resilience, travel, vacation

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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