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Reflections on the Messy Complexity of Chronicity

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While the Soup Simmers

Evelyn Herwitz · April 11, 2017 · 2 Comments

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.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch Tagged With: body-mind balance, cooking, finger ulcers, hands, managing chronic disease, Raynaud's, resilience

Spring Tease

Evelyn Herwitz · March 28, 2017 · 1 Comment

I bought a bouquet of Irish daffodils on Friday, three bunches of slender stalks with buds barely open. By Sunday, they had bloomed, a vase of sunshine in our dining room. Outside, snow still covered the ground. I bundled up in my long winter coat, wool hat, scarf and mittens to brave the damp chill for a half-hour walk around the neighborhood. Winter is clinging, white-knuckled, to Central New England. It’s high time to let go.

In some ways, the spring-masquerading-like-February makes me feel like a bear that is groggy, awakening from a long winter’s hybernation. My finger ulcers are simply not healing, and they smart when I change bandages twice a day. My metabolism feels sluggish from the cold. It’s hard for me to get going in the morning, when the sunlight spells spring but the temperature remains in denial. I really had to force myself out the door on Sunday, but I was glad for the reward of a cleared mind.

But winter cannot supress spring forever. As I walked, I noticed a misting of pale green about some trees. The Callery pear in front of our house has white buds, too. Near the melting edges of snow, tender green blades of grass poke skyward. The earth smells muddy and ripe.

There is birdsong, too. On Sunday, beneath overcast skies, the crows dominated. But the day before, as I walked up the street, dozens of melodies filled the air. Exuberant birds trilled, tweeted, cooed. I wondered what they were saying to one another, and I was glad for their company.

So, I await warmer weather with impatience, yet reassured that nature’s rhythms prevail. Until the snow melts, I’ll fill my vases with daffodils and let the sunshine in.

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: body-mind balance, managing chronic disease, resilience

Small Courtesies

Evelyn Herwitz · March 21, 2017 · 2 Comments

Amidst the chaos of wire tapping accusations, North Korean ballistic missile tests, proposed budget cuts to so many important federal programs—including the National Institutes of Health, which fund, among other things, research for cures to diseases like scleroderma—amidst all that and more, plus the minor annoyances of daily life, such as discovering that this blog did not publish properly last week (apologies if you subscribe and received a duplicate of last week’s post), I am trying to focus on something positive to keep my blood pressure from spiking.

Like the fact that the guy behind me in the supermarket check-out line smiled and nodded thanks when I placed the metal spacer bar after my food on the conveyer belt, to make room for his groceries.

Or the way that people I don’t know held a door open for me as I was leaving a building this the weekend.

Or how someone graciously allowed me to make a left hand turn from a side street, across busy city traffic, to get in line in front of him for a stoplight.

Small courtesies, the ways that we acknowledge each other’s needs and feelings without fanfare, are essential to keeping sane. More than that, little acts of consideration are the warp and weft of a civil society. When leaders flaunt basic social norms—like honesty and respect for others with different points of view—it falls to the rest of us to strive even harder to be, yes, polite.

Maybe this sounds silly, trivial, like a schoolmarm’s chiding. Etiquette is one of those subjects that has been shoved into the back closet, mocked as an arcane, snobbish concern over which fork to use at a fancy dinner. Those rules are not my concern here. Rather, I’m referring to the deeper meaning of the word. At this time, in this country, with so much social strife and dissension, it’s well worth remembering the wisdom of etiquette maven Emily Post:

“Consideration for the rights and feelings of others is not merely a rule for behavior in public but the very foundation upon which social life is built.”

Amen to that.

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: Andrew Branch

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Filed Under: Body, Hearing, Mind, Sight Tagged With: body-mind balance, managing chronic disease, mindfulness, resilience

Storm Tracking

Evelyn Herwitz · March 14, 2017 · Leave a Comment

I’ve been staying indoors for much of the past few days. First, we were hit with single-digit, bitter cold and wind. It’s sunny out as I write on Monday afternoon, but still too cold for a much-needed walk. And by this time on Tuesday, I expect to be watching snow swirling and piling all around as a Nor’easter sweeps up the coast. We’re due for 12-18 inches, maybe more.

So much for gliding into spring.

My hands have certainly had enough. Four fingers on the right hand, three on the left, bandaged up because my ulcers and cracked skin won’t heal in cold, dry air, even with the heat on and plenty of clothing layers. I really wish I could use one of those Sick Bay gizmos on the original Star Trek, wave it over my hands and make the ulcers go away.

I wish I could do the same to solve the terrible discord in our country. I read and read and read, trying to stay on top of all the news without driving myself insane. Staying informed is the essential first step. Balancing how to manage my health and energy and anxiety level as I debate how to get involved in preserving our democracy has become a major preoccupation.

What to do? What to do? When we were kids, my older sister used to write comics with a stick figure girl (you could tell because she had a triangle for a skirt) who would ask that question and then, in a lightbulb flash, always declare I have it! with a ready solution to the dilemma. I can’t recall any more of the story lines, but they always made me laugh.

No quick solutions to our national crisis of conscience, no magic tricorder for my hands, no way to avoid a Nor’easter hurtling our way. Nothing to do but sit and watch the snow fall. I will remind myself to be grateful for our warm house and secure roof and full cupboards, for doctors who care about me and insurance to pay for it all. I will give myself permission to plan my personal political commitment in my own time, rather than over-reacting to the outrage du jour. And I will seek comic relief.

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: Jude Beck

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, finger ulcers, hands, managing chronic disease, mindfulness, Raynaud's, resilience, stress

Introducing Trumpcare

Evelyn Herwitz · March 7, 2017 · 2 Comments

Yesterday, House Republicans revealed their plans to replace Obamacare, otherwise known as the Affordable Care Act (ACA), with their own remedy, the American Health Care Act (AHCA), soon to be known as Trumpcare.

The good news: the AHCA still mandates that people with pre-existing medical conditions cannot be denied insurance coverage, and that insurers cannot charge them more due to their health. The bad news: It may become more difficult to find robust policies that offer the comprehensive coverage needed by people with chronic health concerns.

Some of the proposed provisions of the new legislation do not go into effect until 2018 (after the mid-term elections) or 2020 (after the next presidential election). Here’s a round-up of some of the best reporting and analysis I’ve found so far:

Washington Post  House Republicans release long-awaited plan to replace Obamacare  3-6-17

New York Times   The Parts of Obamacare Republicans Will Keep, Change or Discard  3-6-17

CNN Money   Republicans’ Obamacare replacement bill: The winners and losers  3-6-17

Forbes   Republican Health Care Plan’s Continuous Coverage Idea Needs a Redraft 3-6-17

We have a long way to go before this issue is resolved. Four Republican Senators have already expressed their concerns about the House proposal, and the Democrats are promising a fight. Somehow, someway, I sincerely hope we can get past the partisan wrangling to come up with a solution that truly works for all Americans. It’s not going to be easy, and it certainly is not going to be quick.

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: Motion Studios

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Filed Under: Body, Hearing, Mind, Sight Tagged With: health care insurance, managing chronic disease, Obamacare, Trumpcare

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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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