Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Falling Leaves

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See how efficient it is,
how it keeps its shape—
our century’s hatred.
How easily it vaults the tallest obstacles.
How rapidly it pounces, tracks us down.

from “Hatred” by Nobel laureate Wisława Szymborska

Cruel words, cruel acts eddy and swirl in every corner of our country since Election Day. I await our president-elect’s forceful denunciation of the hate speech and hateful acts being committed in his name. Two weeks and counting.

I take comfort in the many acts of kindness and caring by everyday Americans to censor those who feel emboldened to say and do what they have apparently been thinking all along. This gives me strength.

I feel wary. Will I be a target of derision, with my long pinched nose and tight mouth and awkward hands that slow me up at the checkout counter, while others wait? It is not a question that I have ever considered before. When I was grocery shopping on Friday afternoon, a man with tattooed arms hovered nearby while I rang up my items at the self-checkout lane. He kept moving closer, then stepping back, impatient. He said nothing. He did not make eye contact as I moved to the side to finish packing my bag. Before the election, I would have simply thought he was in a hurry. Now, I am not so sure. Or, perhaps, I am the one who is judging him unfairly.

Fears hover beneath the surface of normalcy. Thanksgiving is coming and I don’t feel celebratory. But I want to. I want to enjoy the holiday with my family. So I turn my focus to my many blessings: my loving husband and adult daughters, the warmth that greets me when I step inside our home from the approaching cold of winter, our quiet street, supportive friends and community, my clients who entrust me to promote their good works, the freedom to express my own truths through my writing, my art.

I am grateful for our great country, for all its fault lines and bitter conflicts. We can do better. We must.

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: Timothy Meinberg

Come Fly with Me

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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

Mending

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My grandmother Elli was an expert seamstress. She learned from her father, a Berlin fashion designer during the 1920s. When she came to visit us in the spring, she would help me make doll clothes. One particularly striking outfit was a black-and-white houndstooth check dress with hand-sewn, red rickrack. My dolls were quite stylish. When I sewed my own senior prom dress, Elli was there to teach me how to insert a prick-stitch zipper. The dress no longer fits, but it still hangs in the back of my closet.

img_2440When Elli died, I inherited her huge, multi-tiered wooden sewing box, which included, among other treasures, tin boxes full of buttons. Over the years, I accumulated my own stash, a source of delight for my daughters as I worked on sewing projects at the dining room table. Buttons would become tiny plates and food, matching and counting games.

The sewing box is battered, now, sitting in our basement family room. But it still contains  wonderful traces of my grandmother—spools of silk thread that must be at least a century old, tiny cardboard tubes wrapped with various dark shades of darning thread for mending socks, black hooks-and-eyes sewn to a card.

I never learned how to darn, and I can no longer sew on buttons by hand without great difficulty—too hard to hold the button in place and manipulate the needle and thread. So I delegate that task. But I like to repair clothes. It’s a way of conserving resources and fighting back against our throw-away economy. I tackle any mending project with my trusty Viking Husqvarna sewing machine, which I purchased about thirty years ago and has never failed me.

The other day, my eldest asked if I could mend a favorite sweater that had gotten snagged, causing a seam to unravel. Ideally, it should have been crocheted back together, but that was out of the question. I wasn’t sure if I could fix it, but I promised her I’d try.

From decades of sewing, especially when my hands were more nimble, I have accumulated a thread collection that rivals the one I inherited from my grandmother. Sure enough, I had the right maroon thread to match the sweater. I pinned the seam back together, carefully unrolling the edges to align without losing any more knit stitches. I set the machine for a narrow zig-zag, to secure the seam without losing stretch. And I slowly stitched away, forcing the knit fabric toward the feed-dog so the seam wouldn’t sag.

I didn’t know if my method worked until I finished the seam—but it did. The inside edge is not as neat as the original, but the outside looks perfectly fine. One sweater saved. A small victory in a world so far removed from Elli’s day, when mending was not only a practical matter of conserving scarce resources, but also an art form.

At a time when so much seems so easily torn asunder, a worthy pursuit.

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.

Unplugged

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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.

Exposed

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For a couple of days recently, I was down to one bandaged digital ulcer—my right thumb, still healing from surgery in June. Every few years, especially when there’s been a long hot spell, this happens. I can actually see most of my fingertips, a bandage vacation.

hand-2It’s very nice while it lasts. I can get going in the morning much more quickly—a couple of minutes, instead of the usual 20, to care for my hands. But it feels very strange. The fingers that have been under wraps for months, sometimes for the entire year, are extremely sensitive to touch. My left thumb, in particular, has some nerve damage that becomes much more pronounced when it goes Full Monty. By the end of the day, it’s tingling almost constantly.

Even still, I’m amazed and glad to be able to take a break from the bandages. Careful as I am to keep my hands clean, they get grubby during the day. The bandages shred at the edges and the adhesive attracts dirt. (I only use fabric bandages, which breathe and remain fairly comfortable, despite daily wear and tear.) Plus, I can’t sense exactly what I’m touching. This is the most frustrating part.

But walking around with almost bare hands can have some unexpected consequences. On one of the days when my fingers were exposed, I bought some groceries. The young cashier asked with genuine sympathy, “What happened to your hands?” I gave my standard reply about ulcers (sometimes, it’s just too much to explain about scleroderma) and went on my way. Only later did I realize that she wasn’t inquiring about all the bandages—there was just one. She was commenting on my oddly stunted fingers, misshapen by resorption of bones in my fingertips. Usually, no one can see, because of all the dressings.

Scleroderma causes a myriad of hand distortions. The oddest visual aspect of the disease, in my case, is that I barely have any fingernails left. This is actually what the cashier was asking about—it looks as if the tips of my fingers have been chopped off.

A missed opportunity for a teachable moment about this disease, certainly. At the same time, however, talking about a personal, physical disability with a casual stranger is murky territory.

My hands are strikingly different. I’ve had this disease for so many decades that I don’t really blame someone from wondering about them. The cashier was not ridiculing me. She was concerned, merely articulating what most people who meet me for the first time may be thinking.

However, I also don’t always feel like having to explain why my hands look strange. My hands are my hands, they are the only hands I have, and they serve me well, despite all the struggles inherent to this disease. They are certainly a distinctive feature. Enough said.

All of this will be a moot point, soon. The weather changed over the weekend from sultry heat to cool breezes by Sunday evening. I’m back to three bandages, and as it gets colder, I’ll have more. My stubby fingertips (the middle fingers on both hands are the most damaged) will hide under wraps again for the better part of the year. Time to find my gloves and pull out the sweaters.

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.