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We had our first snow of the season on Saturday—a fluffy powder that transformed trees to Battenberg lace. The flakes were too tiny to reveal intricacies as they speckled my brown coat on my walk to and from our synagogue for Shabbat services. By evening, at least four inches covered Al’s car in our drive, and our once-plowed street was white again.

But, no matter. It was our 33rd wedding anniversary, and we would not be deterred from dinner at our favorite restaurant. Snow powdered the night sky as Al carefully drove us along semi-cleared streets. A few other intrepid New Englanders were out and about, as well, and the restaurant was packed when we arrived. We watched the snow blowing beyond the windows as we toasted another year together, a challenging year dominated by my deteriorating hands, but a year that brought us closer.

By the next morning, the sun was high and snow dripped from trees and eaves. We enjoyed a great brunch out, then drove into Boston for a powerful performance of Hold These Truths, a play by Jeanne Sakata, at the Lyric Stage Company. It’s based on the true story of Gordon Hirabayashi, who challenged the internment of fellow Japanese American citizens during World War II. Inspiring and sobering, well worth seeing, especially now.

I was still thinking about the play on Monday as I set out to the hospital at seven o’clock for my HBO therapy. By the time I left, nearly half-past eleven, the temperature was mild, much like that day so long ago when Al and I married.

It was my second marriage, his first. I had sewn my wedding gown, hand stitching nine yards of lace to the tulle veil. The rabbi who introduced us performed the ceremony. We were giddy and full of optimism as we drove to Cape Cod for our honeymoon. One misty night, as we walked Nauset Beach, the sand sparkled with each footstep and the sea froth glowed. It was ghostly, mystical. It gave me chills.

Later, we learned that we had witnessed the natural phenomenon of sea phosphorescence, caused by tiny sea creatures, or, perhaps, some form of sea algae, with their own inner light. But I still think back on that night, when we had no answers and only astonishment, as filled with an eerie, magnificent magic.

About a month later, we learned that I had some form of autoimmune disease. Three years beyond that, I was diagnosed with scleroderma.

I have written before in these posts how a complex, chronic disease becomes the third—unwanted but ultimately accepted—partner in a marriage. Sometimes it fades to the background and can almost be forgotten. Other times, it clears its throat with a rough cough, demanding attention. Then there are times, like this year, when it roars and dominates.

Thirty-three years is a long time to live with an unwelcome guest. Throughout, Al has been by my side, steadfast, the one who hears and sees the worst of it and always reminds me that as long as we have each other, we’ll be okay. The excitement I felt on our wedding day may have all too soon been supplanted by the fear and anguish of a terrifying diagnosis. But love and trust, tended over decades, have proven much stronger than any disease.

Outside our window on Monday night, the streetlamp casts a stark, inky shadow on the snow from the sign Al placed on our front yard a few weeks ago: “Hate Has No Home Here.” He has given more signs to our neighbors, who were pleased to accept them. A few have placed the signs already; he hopes to create a little oasis of radiance on our street. Wednesday evening, at his initiative, we will help serve meals at a homeless shelter nearby.

This is the man who left a trail of sparkles in the sand on a misty night, as a ghostly surf pounded the shore. I had no idea, then, how truly lucky I was.

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.

Image Credit: Luke Hodde

Baking Bread

As of today, I am two-thirds of the way through my HBO treatments: 20 dives down, 10 to go. Last week’s mishegas about another potential infection was doused effectively with medical grade bleach soaks for the recalcitrant graft and a visit to Dr. S, who reassured me that the finger looked fine. Thank goodness!

Meanwhile, I continue to make more progress. Each day, the edges of the grafts pull a little farther away from surrounding skin, which is what they are supposed to do as new skin forms beneath. My fingers feel more able, despite missing tips and odd shapes.

I didn’t cook Thanksgiving dinner (Al’s department—and very good it was, too), but I did make the stuffing that we baked separately in the oven (main course was pecan-crusted salmon). This is one of the first times in about six months that I could tolerate stirring contents of a hot pan. Previously, the rising heat and steam were very painful to my exposed, over-sensitive wounds. Not to mention, I couldn’t hold the spoon.

My biggest accomplishment in the kitchen, however, was finally being able to bake bread again. It has been my practice for years to bake fresh challah for our Friday night Shabbat meal. I have a great recipe from a cookbook that my sister gave me nearly 30 years ago, and I’ve been making it since Mindi was a toddler who relished punching down the risen dough each week.

It’s the highlight of our Shabbat dinner, as well as a source of pleasure and pride for me to provide my family and friends with delicious homemade bread. But my hand debacle has made this favorite, meditative task an impossibility since summer. Al took over baking after my surgery and has become quite adept. Still, I missed doing it myself.

So this post-Thanksgiving Friday, as I was hanging out in the kitchen with my two visiting daughters, I decided to see if I could once again slip my fingers into a pair of de rigueudisposable rubber gloves, essential for any handling of raw ingredients—and, voila, to my amazement, they fit over my bandages without any discomfort! I proceeded to proof the yeast, pour flour, sugar, salt, oil and eggs, plus the yeast and warm water, into our old Cuisinart, mix the dough and pull it out onto the floured bread board.

And, as my daughters gave approval and encouragement, I kneaded the dough by hand. This is my favorite part of baking bread. There is something so magical and satisfying about feeling the dough transform from a sticky mass to a smooth, soft, elastic whole. My hands had not lost too much strength or touch. Into the oiled bowl the dough went, covered with a clean towel, to rise.

I punched it down for the first rising, but Mindi was getting organized to drive back to Boston by the time the dough had doubled in size a second time. “Do you want to punch it down?” I asked. “It was a little hard for me because my fingers don’t bend quite right.” She smiled, then proceeded to expertly punch all the air out of the dough. Still a special moment to share.

Later, when the challah came out of the oven, I sent her a text with a photo.

“Ta-da!” I wrote.

“Very nice!” she responded.

Yes, very nice, indeed.

P.S. This post is my 300th entry in this blog, When I began writing in January 2012, I had no idea where what has become an online journal of my life with scleroderma—and just life, which is really the point—would take me. More than 200,000 words later, I’m still discovering. Thank you, Dear Reader, for sharing the journey, and for your encouraging and thoughtful comments along the way, which keep me going.

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.

While the Soup Simmers

I’m writing on Sunday night, as the Egyptian potato soup simmers on the stove and our community radio station plays a Middle Eastern mix. I’ve been cooking all day for our Monday night Passover seder, and I’m feeling good. A lot better than I anticipated this morning, when I woke with pain in my ulcers, an aching foot and one thought: How am I going to get through the cooking marathon today?

I groused at Al. I rubbed my temples. I studied the long list of fruits and vegetables that I needed to buy before lunch and realized I’d forgotten to ask Al to pick up one key ingredient from the kosher market in Brookline (an hour’s drive from home) several weeks ago.

He suggested checking the Passover aisle at our local supermarket, just in case they had those kosher-for-Passover hearts of palm. I agreed, then thought of an alternative in case they didn’t. I knew Al stood ready to serve as sous-chef, as need, for all the chopping and peeling ahead. Time to dive in.

To my astonishment, when I got to the store, the Passover aisle was still well-stocked, including hearts of palm—three cans, even. I moved on to the second supermarket and filled my cart with fresh strawberries, blueberries, blackberries, bananas, a mango, avocados, cauliflowers, leeks, romaine lettuce, potatoes, beets, onions, garlic, celery, parsley, asparagus, baby spinach, eggplants. At the check-out, the cashier admired my choices and told me how much he loves vegetables (except eggplants). I told him how to enjoy beets in a salad (add gorgonzola and toasted walnuts).

By the time I got back home, Al had switched over our kitchen to all of our Passover dishes—the culmination of several days of cleaning and preparation. We went out for a quick lunch, and then I began cooking in earnest. The night before, I’d already started the pickled salmon, which marinates for a couple of days. Next up was curried eggplant. I was able to do all the peeling and chopping myself while Al worked on the yard.

Then came the Egyptian haroset, a mixture of dates, golden raisins, ground almonds and sugar syrup. Only one problem: when I placed the mixture in my little Passover food processor, it wouldn’t turn on. I tried another electrical outlet. No go. I asked Al to try it. Maybe I hadn’t aligned it properly. Zip. Four o’clock in the afternoon, and it was time for another run to Target.

I opted for an immersion blender and picked up a few other cooking items to make life easier for the rest of the week. Before we left for dinner, the haroset was well blended, cooked to perfection and chilling in the refrigerator.

By 7:30, I was back in the kitchen, separating nine eggs for the apricot sponge cake and cursing at the little pieces of eggshell that had dropped into the whites. But I persisted. Al helped me fold the meringue into the batter, the one part of the recipe I can no longer do.

Now the sponge cake rests upside down in its tube pan, cooling overnight. The asparagus are happily plumped with water, standing tall in their pan until it’s time to steam them tomorrow afternoon. The potatoes and leeks and celery and garlic and turmeric, salt, pepper, bay leaf and water have finished simmering in the time it took me to write, and the lovely mix is now cooling in the 70-year-old white enamelware that was once my mother-in-law’s Passover soup pot. Just need to add the fresh lemon juice before serving.

All that’s left for tomorrow are the spinach-cheese patties, the avocado-tomato-hearts-of-palm-pesto salad, the roasted cauliflower, the boiled eggs and the seder plate. That’s the easy stuff.

The prospect of cooking for Passover, with my once-a-year set of dishes, the crazy schedule, and the inevitable stuff that goes wrong, always overwhelms—especially because the holiday falls in the spring, when my ulcers are at their worst. But somehow, it always works out. And tastes great. And provides a beautiful setting for our seder. This year, more than ever, I am grateful that I can still make a splendid feast for family and friends, and focus on what really matters: what it means to be free.

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.

Guilty Pleasures

That old saw about New England weather—just wait a minute, it will change—holds true now more than ever. After what seemed like an onslaught of snow and ice, we suddenly were treated to a major thaw. Temperatures last week rose to the high 60’s. Only lumps and clumps of snow remain, blackened by car exhaust and grit. Friday afternoon, I went food shopping wearing just a sweater to keep me warm.

We’re back to seasonable 40’s for a few days, then more balmy temperatures. Some find this anxiety-provoking. Record-breaking warmth is more evidence that climate change is real. I worry about this, too. News reports are frightening: severe drought in some parts of the world versus severe flooding elsewhere, melting ice caps, reduced ocean oxygen levels, bleached coral reefs, declining biodiversity, extreme storms—how will our precious planet survive?

But I must admit, on a purely personal, very selfish level—I really enjoy the warmer weather. I can’t help it. I just feel so much better when the temperature goes above 60 degrees Fahrenheit. My whole body relaxes. My ulcers heal. And I don’t have to go anywhere beyond my front door.

Don’t get me wrong. I believe we must do everything possible to slow the trend of global warming. There is far too much reliable scientific evidence that without serious efforts to reduce human production of greenhouse gasses, the ice caps will continue to melt, ocean levels will continue to rise, too many species will die before they can adapt to rapid climate change, food production will be disrupted . . . the list of dislocation and natural disasters goes on and on.

Knowing all that, doing my best to recycle and reduce my carbon footprint and support public policy that promotes responsible environmental stewardship . . . I still can’t help it. I won’t go so far as to wish for oceanfront property in Central Massachusetts. But I’ll take a warm day in February over ice and snow, any time.

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.

Image Credit: Miriams-Fotos

In 3-2-1

I stay up way too late most nights watching late night comedians. Since we live on the East Coast, this means I’m getting to bed around midnight. My evening routine is prolonged by tending to all the bandages on my fingers—up to six ulcers at present, plus one on my left ankle—so my excuse is that the shows keep me company while I’m taking care of my hands. But in all honesty, I rely on satire to keep my sanity.

My favorite is Stephen Colbert. Al’s, too. So when Al suggested that we mark our anniversary this year by a trip to NYC to see a live taping of The Late Show, I readily agreed. We were married in December 32 years ago, but due to scheduling conflicts, our first opportunity to go was last week.

And go, we did. We decided to make a mini vacation of it, booking a four star hotel on Park Avenue at a January discount, scoring half-price tickets to a Sunday afternoon off-Broadway show, enjoying great food and wonderful art museums on Monday and Tuesday. But the highlight of the trip was our pilgrimage to the Ed Sullivan Theatre for Colbert on Monday afternoon.

Now, as children of the ’60s, it was exciting enough to be at the very spot where the Beatles made their American debut. The theatre features architectural filagree that gives it a period flare. It’s located on Broadway between West 53rd and 54th Streets–the latter also designated as Señor Wences Way, a throwback to that wonderful, corny feature act on the Ed Sullivan Show that we loved as kids.

But it was also fun just to be with other Colbert fans as we waited outside, joking and speculating about the program as we stamped our feet and huddled against the cold. The priority ticket line formed at 3:00 p.m. We arrived shortly after and quickly made our way through the check-in, staffed by friendly red-jacketed twenty-somethings armed with iPads and headphones, who made occasional announcements about what to do and where to go. A nice couple offered to take our picture in front of the marquee, and we returned the favor.

By 3:45, rehearsal was over and we were finally allowed to enter the warm theatre lobby. More waiting and waiting in a long, snaking line beneath large TV monitors playing excerpts from previous shows, though the sound was muted. From time to time, one of the staff would fill us in on next steps and rules: turn off all cell phones, no food allowed in the studio theatre, and—around 4:30—now’s the time to use the bathroom, because once you’re seated, there are no bathroom breaks.

Wait, what? I’d figured that, if I had to go, I’d be able to do so during a commercial. But, no, only if it was an emergency—and no guarantee you could be reseated. Now, this was potentially a major issue for me. I can no longer go long stretches without a trip to the bathroom. My bladder just doesn’t empty efficiently. So I joined a line of other women, waiting for a stall in the Ladies’ Room, and hoped I could squeeze out the last drop. Fortunately, we’d eaten lunch about two hours earlier, and I hadn’t had much to drink.

Back in line, I distracted myself by chatting with some of our neighbors, flexing my ankles and feeling grateful that I was wearing compression knee socks, so that my feet wouldn’t swell from all the standing around. Finally, shortly after 5:00, it was time to be seated. The red jackets were very experienced at crowd control, and we efficiently filed into the main floor. Lo and behold, the center section was full, so Al and I found ourselves guided toward the third row of the right-hand section, directly in front of Jon Batiste’s Steinway concert grand piano. Al was in heaven.

Here we were, with a great view of the Late Show set, so familiar from our TV at home. We gawked and chatted with our seat mates (mine was a Lutheran pastor from Saskatchewan, here with friends for her first visit to NYC), listened to more instructions about our role as audience (enthusiasm and energy are essential for the performers as well as the 2.5 million folks watching later tonight), practiced standing and cheering, warmed up to the warm-up comic, clapped and bopped to the outstanding jazz of Jon Batiste and Stay Human, and then, finally, screamed our heads off, just like those Beatles fans fifty years ago, when Stephen Colbert ran out on stage to greet us.

He was genuinely warm in person, very down-to-earth, as he fielded a few questions from the audience with his quick, dry wit. Then it was time for the taping to begin. We could watch the cold open on the video monitors, then Colbert ran out on stage again, this time as part of the show. The boom camera swept the audience, and we were off to the races.

Time zipped by. There was a surreal quality to the experience, watching Colbert perform for the four cameras that surrounded him in his opening monologue, even as he fed off our energy. There was a pause for him to switch from his suit jacket to a Dad sweater for a skit with guest Leslie Mann, another pause because one of the lights wasn’t working properly, casting a shadow on the couch where they were to sit. “The Russians must have hacked our set,” he quipped.

The band played on during commercial breaks (how I wish that were the case when you watch on television–they are such amazing talents). Lewis Black and Dan Levy rounded out the program. We stood and cheered on cue (when the stage manager waved his rolled-up script in the air). Colbert’s wife made a surprise appearance to roars of approval.

And then it was over. I’d been so absorbed, I’d forgotten all about any bathroom jitters. Al and I looked at each other. We didn’t want it to end. Despite the cold, we walked all the way from Times Square back to a little Italian restaurant near our hotel, where we enjoyed a fine dinner and live piano music. Later, we watched the show again in our hotel room, to see how it was edited and, of course, to see if we made it onto the tape. And there we stood, cheering in the crowd after one of the early commercial breaks! I finished bandaging my fingers, and we went soundly to sleep.

All in all, it was a wonderful anniversary celebration—a great break, a much-needed chance to recharge, a gift of resilience. And, oh, did I mention? The Colbert tickets were free.

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.

Come Fly with Me

There was a time when air travel used to be fun—glamorous, even. The ability to arrive somewhere far away in a few hours was still novel when I was growing up. Flying was a special treat, comfortable, efficient, with plenty to eat and room to relax.

stocksnap_ev0wq57le6No more. Post 9/11, in the era of long security lines and maximizing revenues at the expense of travelers, flying—especially domestic routes—is an ordeal to be endured.

Last week I made a short trip to Chicago on business and was struck, once again, by how unpleasant flying has become. The only plus: on both legs, I had the good fortune of TSA Pre-Check; hence, less fumbling with my bags and belongings, which spared my hands a bit of strain. After that, however, things went downhill.

My trip from Boston started with a 15 minute delay, as we waited for our flight attendants to disembark from another “live flight” (the lingo is remarkable, in itself—what was the alternative, to arrive on a zombie flight?).

Just as the crew finally filed through our gate (without taking a break—they appeared and sounded bedraggled) and it looked like we would be boarding momentarily, one of the customer service reps answered a phone call and became a bit agitated. Uh-oh, I thought. He was shaking his head while speaking to his colleagues, until, thank goodness, a pair of pilots arrived on the scene. Turns out our original pilots had timed out, and this new pair was pulled off a flight to LA to take us to Chicago.

What would have happened if they hadn’t been available? And what happened to the passengers on the LA flight? It boggles my mind. There is no way to count on leaving on time.

En route, there were the obligatory free sodas and little snack packages that I find nearly impossible to rip open. I had consumed my peanut-butter-and-jam sandwich while still at the airport, to avoid risk to a potential seat mate with a nut allergy. I passed the time writing, which took my mind off the fact that I felt like the proverbial sardine squished in a can. There is simply no room to maneuver in an economy seat—and I am small. I did my best to ease strain on my knees by resting my feet on my backpack under the forward seat. We arrived about a half-hour late. It was a relief to get out of there.

Coming home was even more aggravating. My mid-afternoon flight on Friday was on schedule when I left the Loop for O’Hare. But by the time I arrived and passed through security, it was 12 minutes late. Not a good sign. Soon, we were pushed back a half-hour, then an hour. It was raining hard in Boston, and Logan was slowing down incoming flights. Any hopes of getting home in time for Shabbat dinner with my family were dashed—especially once I had to check through my carry-on bag due to lack of overhead storage (of course).

We finally were allowed to board 90 minutes late, only to sit on the tarmac for another half-hour, waiting for permission to take off due to Boston weather. I called the limo service that was to bring me home, to alert them to the latest delay and my need to go through baggage claim, and found out that I now couldn’t get a ride until 10:30. I called Al, and he said he’d come and pick me up.

All through this, I was trying to be philosophical. Really, this was no one’s fault. Bad weather is bad weather, and it was safer to leave later. As long as this flight crew didn’t time out, we’d be okay. But the process of waiting was just, well, draining. The airport was crowded. The food options were overpriced and not very good. Everyone sat around with their noses in their smartphones or laptops (myself included). There was some minimal esprit de corps, snippets of conversations, but mostly a sense of soldiering on. Really, everyone knows air travel will be just a royal pain of delays, screwed up plans and stress. We’ve all lowered our expectations, and unless you can afford first class seats and amenities, the pretense of a pleasant flight is only that—a pretense.

Once in the air, I immersed myself in Patti Smith’s exquisite memoir M Train, which proved the perfect escape from all the aggravations of air travel—until we hit some serious turbulence approaching Logan. I had no idea how bad the weather was until then. Lightening flashed in distant clouds. Otherwise, you couldn’t see a thing. The pilot directed the flight attendants to go to their jump-seats. They asked us to wake fellow passengers as we began our final decent, because they could not walk the aisles.

It was a relief to land safely. As we taxied to our gate at Logan, through the pouring rain, one of the flight attendants made the obligatory announcement that she hoped we had enjoyed our flight. Really? I looked at one of my seat mates, and we both chuckled. It would have been so much more honest if she’d simply said what we were all thinking—glad we made it.

Fortunately, Al arrived safely at the airport, just as I was heading to the baggage claim. The rain eased as we drove farther west on the Pike—a good thing, because only hours earlier, downtown streets in our city were severely flooded.

Needless to say, it was great to get home. Over the weekend, I received an email asking me to rate my travel experience. I’m still considering how to respond.

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.

Image Credit: Josh Sorenson

Unplugged

img_2433I’m writing Sunday morning at the dining room table, snatching a few quiet minutes before I launch into mega-cooking mode. Rosh Hashanah starts this evening, we have family coming for dinner tonight and friends tomorrow. I’ve been spreading out the work over several days to manage my hands and feet and energy, but inevitably, there is a lot to do until the last minute, when our guests arrive.

Then I’m going to unplug. One of my resolutions for the Jewish New Year is to stay offline on the holidays and Shabbat. I have become totally addicted to political news during this crazy, horrible election season, and I need to take a break from all the stress. The past two weekends, I put away my iPhone from Friday sunset to Saturday sunset, and I feel SO MUCH BETTER.

The reality is this: Unless there is a true emergency (a tornado, a flash flood, a fire), you don’t miss anything that important by skipping the news cycle for a day. It is a true relief to spare yourself the bombardment of bombast, hysterical headlines, frenetic Facebook feed and ceaseless flash of ads and images. You begin to realize your time and attention are your own to own. Your shoulders relax and you can concentrate with greater focus on what’s truly important.

So, on to cooking and good company and contemplating what I have to be grateful for in this life and how I could do better by others. To those who celebrate, my best wishes for a sweet, fulfilling and peaceful New Year. And to those of you with different beliefs, I wish you a healthful, stress-free break, however you define it, from whatever may be weighing you down.

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.

Resilience

Eight days after a bomb shook the Chelsea neighborhood of lower Manhattan, I am in NYC on a business trip, staying in a hotel just a few blocks from where the explosion rocked W 23rd Street. You would never know anything had happened.

I arrived here Sunday afternoon, to be fully rested for a long day of meetings on Monday. I was tired from the train ride, but I didn’t want to lose the day, sunny and clear, with a hint of fall in the air. So I took a long walk to visit to the new Whitney Museum and catch the last day of a powerful retrospective exhibit by photographer Danny Lyon. After a lovely dinner, I walked the High Line back up to 23rd and across 5th Avenue to the east side of Manhattan, passing the site of the explosion without even noticing anything unusual.

New Yorkers are hardy folk. It was incredibly reassuring, after all the horrible headlines, to see how life goes on as normal here. People were out walking their dogs, going on dates, hanging out with friends, taking selfies, eating in restaurants, smoking cigarettes, sitting on benches while immersed in deep conversations. Two men sang their hearts out, busking for the High Line crowd. I passed a man sleeping on the sidewalk. Next to his head, someone had placed a bottle of water and a fresh sandwich wrapped in cellophane.

I must have walked at least four miles, down to the museum and back. Any tension I felt when I set out in the afternoon had completely vanished by the time I returned to my room, a little after eight. There is much more to life than what is filtered through the news. So, come along with me and enjoy the view. . . .

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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.

Immersion

Could it really be that Al and I were in Pisa, Italy, on Sunday? And in Venice, Florence and the Isle of Elba over the preceding two-and-a-half weeks? Air travel makes it possible to be halfway around the world in the morning and back home late the same night (depending on which direction you’re traveling). But my mind is somewhere in-between. And I want to hold onto the memories of our journey for as long as I can.

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Venice has been a lifelong dream—ever since my father showed me a series of small, black-and-white photos of the canals from his military service in Italy during World War II. Those images made a big impression on me as a little girl. So much so that in first grade, when I had to answer a test question, “True or False, All cities have streets,” I marked it false. My teacher, Miss Kelly, called me up to her desk and asked me why. I explained that Venice has canals. She laughed, and she didn’t mark my answer wrong.

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Whatever I imagined as a child, however, could not compare to the wonder of Venice—a magic puzzle box of winding pedestrian passageways, bridges and canals. Around each corner is yet another stunning, surprising view. We heard jazz and Vivaldi, saw fireworks and Kandinsky, ate delicious meals, drank wonderful wines, and continually got lost and found. We stayed six days, and it wasn’t enough.

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For four days in Florence, we marveled at art, ancient to modern. I could have stared at Botticelli’s The Birth of Venus for hours, were it not for the crowds in the Uffizi—for all the images I’ve seen, and the memes, there is nothing like witnessing a major art work in person. Michelangelo’s David, too, is breathtaking. So is the view of the city and Tuscan hills from Forte di Belevedere, across the Arno, and so much more.

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Our final stop, Pisa, has also been a source of intrigue since childhood. My sister and I had a wall map of the ancient world when we were young, which included a small drawing of the Leaning Tower to indicate where Pisa is located in Italy. How could a building lean like that and still stand? I wondered.

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Well, now I’ve seen it with my own eyes. It does lean and stay standing (thanks to some extraordinary feats of engineering), and the architecture is exquisite. There is much more to the city, of course, which is full of surprises—from the serene Botanical Garden of the University of Pisa to an exhibition of book illustrations by Roberto Innocenti at the Palazzo Blu.

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But our favorite adventure was our four days on Elba, an island off the west coast of Italy, part of the Tuscan Archipelago. Truly, one of the most, if not the most beautiful place I have ever seen. Panoramic mountain views overlooking azure seas, crystal clear water, beautiful hiking trails, salmon sunsets. It was a vacation in the midst of our vacation—calming, quiet, a time to get away from the crowds and contemplate.  

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And, best of all, I went swimming in the Mediterranean—the first time I have been able to swim in at least a decade. The water was warm and so clear and clean that, for once, I was not worried about risking an infection in my fingers. Indeed, the salt water seemed actually to help my ulcers to heal.

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All of this, plus the fact that I was able to tolerate the long plane rides, walk and walk in intense heat (high 90s most of the trip), eat new foods, get enough sleep most nights, and avoid any scleroderma complications—all of this, on top of being able to swing the trip in the first place, was a great gift.

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I’m glad to be back home, where the scenery is familiar. I know where to find just about everything in our house. Family and friends are close by. It was very good to sleep in our own bed once again. But there is so much more of the world to see. As long as we both are healthy enough and able, we hope to keep on traveling. My “Next Trip” list is already in the works.

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.

That’s a Wrap

23924473493_f89d1e0822_zWould someone please explain to me why a cucumber requires shrink wrap? I’m talking about English cucumbers, the long ones that have a very crisp texture and fewer seeds. Their skins aren’t as tough as regular cukes. But shrink wrap? Really?

I hate that shrink wrap. It is next to impossible for me to strip it from the cucumber. My fingers just can’t grip that well. And it clings so tightly, the harder you pull, the more it resists. Honestly, all I want to do is make a salad. Why does it have to be so difficult?

Here are some other food packaging items that drive me crazy:

The plastic film covering, beneath the lid, that clings to the rim of sour cream tubs and yogurt containers. (Those plastic lids aren’t so easy to pry up, either.) I usually have to grab a knife to slit them open, because I cannot grasp the longer edge you’re supposed to use to strip the film away.

The tight foil covering of my calcium chews. These come wrapped individually, with neatly turned ends that are folded the way you wrap a birthday present. Picking those ends up with what’s left of my finger nails takes patience, to say the least.

Plastic screw tops with perforated extensions that twist off when you first open the jar. Usually, I need to wear a pair of rubber dish gloves to be able to hold on without my hand slipping and twist without injuring my skin. I have an adjustable jar opener, but it doesn’t always do the job as well as it should.

Sealed plastic bags for items like shredded cheese that have molded ziplock seals. The idea is that you can reseal the bag after you open it the first time. Problem is I can never pry apart the ziplock, so I inevitably cut it off and put the bag in another plastic bag with a usable ziplock—or just use some other clip to keep it shut. Just give me a bag that opens easily, please.

Sealed plastic wrappers inside sealed cereal or cracker boxes. I can never, ever, pull them apart neatly. It seems like these wrappers used to open easily, but now they are made of some kind of heavier plastic that just won’t yield to my fingers. So I usually ask Al to do it for me.

He, of course, is my secret weapon for all of the above and more. Sometimes I wonder if I depend too heavily on my husband for help with all of these simple tasks. I know I should find more adaptive tools to tackle hermetically sealed packaging. But then I have to have those tools handy every time I try to open something. Which is a nuisance.

Some days, like the other night, when I was rushing to make dinner and had to keep struggling with food wrappers, it’s just plain tiring. And wasteful. I do my best to recycle, but some of that packaging has nowhere to go but the trash. We live in a litigious, germaphobic culture where shrink-wrapped cucumbers are the norm. Even if my hands worked perfectly, there has to be a better way.

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.

Image Credit: Ajax Great