Body

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.

It’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.

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 . . .

Trenches at Hartmannswillerkopf, Vosges Mountains, Alsace, 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

Parliament and Big Ben from the South Bank, London

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.

And 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.

Hands On

Evelyn Herwitz · July 7, 2015 · 3 Comments

How did it get to be July, already? With Independence Day behind us, summer is really here. It’s sunny and lovely and warm, and my hands are happy. I’m down to two bandages for my digital ulcers, one on each thumb. Always remarkable this time of year when I can feel with most of my fingertips.

This has been especially helpful because I’ve been sewing dresses. We’re getting ready for vacation, traveling through Europe to mark our 30th wedding anniversary (last December) and to do some research for a novel I’m writing.

It’s been unseasonably hot there (no complaints from me, although I’m encouraged that the forecast does not include temps upwards of 100 F, which was the case this past week). Dresses, as a friend observed, are easy. You don’t need to figure out what goes with what. Just slip one on, and you’re ready for the day.

One of the great joys of sewing is feeling luscious fabrics as your create your outfit. I’m working on a pattern for a wrap dress, and I found a buttery soft, beautiful rayon matte jersey print to sew.

I’ve learned from many mistakes that it’s best to test the pattern and any alterations first, before risking the good fabric, and I found some black and white cotton jersey in my fabric stash—perfect for experimenting.

So now the test garment is completed, and it looks and fits well enough to take along on the trip. I cut out all the good fabric and began constructing the second version on Sunday. It sews and serges like a dream, and I’m on schedule for finishing before we leave.

Best of all, my hands are fine. Despite whacking one finger on my serger and pricking another with a pin, they feel good as I write. I sew mostly by machine. The serger, which sews, trims and overcasts seams all in one step, is a tremendous help, saving time and extra hand motions. Even though it requires a lot of care when threading (and can be persnickety if I miss a step), it is a real boon. My other essential tool is a good pair of bent-nose tweezers, which helps with all the tiny manipulations I can no longer do with my fingertips.

I was marveling at the fact that my hands aren’t sore after all that work, and then I realized that fewer bandages really do make a difference. I’m so used to having at least four or five fingers wrapped to protect sore ulcers that going bare is full of surprises.

Travel will undoubtedly cause me to revert to more digital protection. I have all my supplies plus antibiotics ready, just in case. But in the meantime, I am savoring the freedom and enjoying the feel of wonderful fabric. It’s been a long time since I’ve been able to sew this much, successfully—a real summertime treat.

Plant a Seed

Evelyn Herwitz · June 30, 2015 · 8 Comments

In Australia, the sunflower has become the symbol of scleroderma awareness—because those of us with the disease feel better in the warmth of the sun. I like this idea a lot. Enough, in fact, to consider trying my hand at planting some sunflowers, if not this summer, then next.

Yesterday, on June 29, scleroderma associations around the globe marked World Scleroderma Day. In nearly two dozen countries in North America, Europe and Oceania, a month of awareness-building culminated with a host of activities, from hospital presentations and meetings of scientists to art gallery exhibitions and a social media series of 25 second videos, in recognition of the estimated 2.5 million people diagnosed with scleroderma worldwide. Today, June 30, the need for a cure will be presented to the European Parliament in Brussels.

June 29 is significant because it marks the death in 1940 of the brilliant artist Paul Klee, who suffered from systemic scleroderma. Klee’s later work was strongly influenced by his disease, even as his last few years were among his most prolific.

Paul Klee’s legacy helped to inspire the formation of the World Scleroderma Foundation, which is based in Basel, Switzerland, and draws together world experts in scleroderma research and patient groups in an effort to support research for a cure. The WSF’s lead patron is Klee’s grandson, Alexander, and his family.

While 2.5 million individuals with scleroderma represents just a sliver of the world’s 7.3 billion people, The WSF makes a compelling argument for the importance of scleroderma research on its website: Not only is the search for a cure needed for the millions who suffer from the disease—most of whom are women of childbearing age—but also scleroderma is a “linchpin disorder”:

A breakthrough in understanding scleroderma would doubtless have a strong impact on many other diseases involving abnormal scarring and blood vessel injury. This might include conditions as diverse as interstitial lung disease, intestinal hypomotility disorders and many illnesses with blood vessel injury as their basis.

Which brings me back to sunflowers. Each sunflower head can contain as many as 2,000 seeds, each of which, in turn, with the right soil, sun and moisture, becomes another sunflower. If we could find a cure for scleroderma, imagine how many other millions of people who struggle with related diseases could be helped, as well.

Plant a seed to find a cure for scleroderma. Visit wolrdsclerodermaday.org to see what’s going on around the globe in support of research for a cure, or make a donation here in the U.S. to the Scleroderma Research Foundation or the Scleroderma Foundation. We’re all in this fight together.

Body

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