Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

En Route

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Traveling always involves a lot of logistics. Last week, all the more so. Months ago, I had planned a three-day, Sunday-through-Tuesday business trip to NYC. The first two days were devoted to board meetings for a philanthropy of which I am a trustee, including a day of strategic planning that I had helped to organize. The third was a full day meeting with clients. I had piggy-backed that third day onto the first two in order to save myself physical wear and tear from traveling to Manhattan twice in one month.

What I had not been able to anticipate, however, was the state of my hands and my back (of which I have written a lot in recent posts). What to do? I couldn’t/didn’t want to cancel out, but I wasn’t sure how to manage. Would I be able to handle my luggage? How would I keep my hands from getting more damaged or protect myself from picking up yet another infection?

My initial plan to protect my hands from lugging a suitcase on and off trains and through subways—use a backpack—was unworkable. With all the supplies I needed to bring for hand maintenance, personal hygiene, medications, etcetera, even packing very lightly for clothing and using Al’s nylon backpack, the thing was way too heavy and unwieldy for my slow-healing, strained back. So I switched over to my wheeling carry-on. But what to do about getting around?

Aha! Obviously, I had to rethink ground transportation. Time to rely on taxis or Lyft or other options. Saving money was not as important as saving my health. And if I did use the subway, I decided I’d only do it if there was elevator access or easily walkable ramps.

As for pulling my bag along Manhattan sidewalks, I planned to keep that to a minimum, not only because of the crowds, but also because many of the streets and sidewalks in Midtown are either under construction or aging and in need of repair.

Sometimes I improvised. When one of the trains I took had split upper and lower deck seating, I stayed in the middle on a jump seat to avoid lugging my luggage and made friends with the conductor, who helped take my bag off the train to a lower platform.

Everything worked out better than expected. From my Monday meeting, located at a Wall Street law firm, I was able to get a courtesy car ride to my Midtown hotel. On Tuesday, I simply checked my bag at the hotel, went to my meeting in Chelsea, and picked it up on my way back to Grand Central, which was a five minute walk down Park Avenue. Train transfers were relatively easy. The one time I used the subway, I only had to carry my bag up and down about six steps.

As for my back, I wore a thermal heat pack all three days and brought my deflatable back pillow to every meeting. I made sure to keep up with regular doses of acetaminophen and ibuprofen. And I took meticulous care of my hands.

It was a long trip on my own when I wasn’t feeling my best, but successful in the end. As my train pulled into New Haven, where I had parked in the overnight garage, I was exhausted and relieved. I couldn’t wait to get in my car and drive home. But. The one thing I hadn’t planned for, the inevitable travel glitch that had nothing to do with my health issues and everything to do with mindfulness or the lack thereof was this: I’d left an interior light on in my car when I’d parked three days prior, and the battery was dead. An hour later, AAA arrived and charged it right up, thank goodness, but I was not a happy camper during the wait.

Successful travel, especially when you deal with chronic health issues, requires a lot of advance planning. But the unexpected is inevitable. You can be certain I will always check interior light status whenever I leave my car from now on. But the other lesson reinforced from my trip was that I can’t anticipate everything. Nonetheless, when traveling alone, I can trust myself to solve it.

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.

Flat Out

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I’ve been writing lying down all day. For some crazy reason that I cannot pinpoint, I screwed up my back over the weekend. Did I sneeze the wrong way? Did my cough cause a muscle spasm? Whatever the explanation, I find myself unable to sit or stand for long stretches. I can’t lift a pot of water or a platter of pasta.

Ridiculous.

This follows at least a week of managing digital ulcer pain with a combination of antibiotics to control an infection, over-the-counter pain meds and my slew of bandages, dressings and ointments. Not to mention fighting a respiratory virus. Which is why I was coughing and sneezing.

Pain is exhausting. It interrupts sleep and demands attention. It voids concentration. It gnaws at your moods and throws obstacles in your path.

Most of all, it slows you down. There’s writing I’ve postponed because I need to rest my fingers. There are errands I want to do and places I want to be that must wait until I feel up to driving. Nothing to do but stretch and wait and rest and respect my body’s need to heal.

It could be much worse, I know. But it’s enough, already. I want to get back to my regular state of quasi-normal. Maybe I’ll get lucky and sleep it off. More likely, I’ll just need to dig deep for more patience and wait it out.

Aaargh!

Thanks for listening,

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: Aimee Vogelsang

While the Soup Simmers

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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.

Spring Tease

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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.

Small Courtesies

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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