Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

finger ulcers

First Snow

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img_2491It’s always a surprise, that first coating of white. This year, it arrived on Monday, just an inch, already melting by mid-afternoon. But the flakes fell softly in the morning, fat, puffy, like thousands of tiny parachutes drifting earthward. Clinging to evergreens, disguising flaws, the snow absorbed sounds as it fell, hushing the world, slowing all down.

Mid-morning, as snow continued to fall outside my window, I was on a video conference call with people in New York City (rain), the Catskills (snow) and the Netherlands (almost never snow). The two young daughters of the Dutch woman overheard us discussing the weather and asked to see. My client in the Catskills turned his computer around to give them a peek of his blanketed yard. Their eyes widened with amazement.

By early afternoon, I had to go to the post office to mail some packages. Should I wear boots? I tried to slip on my rain boots but had to pull them off again. A few weeks ago, I kicked myself in the inner left ankle, one of those slips of coordination that occasionally plague my stride. This has morphed into an ulcer, then a rash from bandage adhesive. I saw my podiatrist last week, who prescribed steroid ointment and compression socks, and explained how weakened veins in my ankles are exacerbating the healing process. Which is why I couldn’t wear the boots. I opted for walking shoes with good treads. I’m hoping the ankle will improve by the time the serious snow falls.

Two o’clock, when I returned home, the sun was shining, the snow compacting as it melted. My footprints revealed slate. I shed shoes for slippers, ate some soup, forbade myself from reading any more news and got back to work. I didn’t notice the sun setting and the darkness settling in.

Winter is coming, and cold, and ulcers, and more snow than I want to contend with. The days grow shorter and darker. Headlines weigh on my heart. But halfway around the world, two little girls giggled at the novelty of a world transformed by white. I did the same when I looked out my window Monday morning. Let there be Wonder.

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.

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

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.

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.

New Tricks

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mr-fluffy-1358436-639x426In our back yard, a supposedly squirrel-proof bird feeder hangs on the trunk of a Norway maple. For the past year-and-a-half, it has confounded the squirrels. They’ve climbed all around it, certain it contains something good to eat. All that spilled seed near the tree’s roots must mean those birds are onto something, right? There just has to be a way to get some, too!

Then, last week, one wily squirrel finally cracked the code. Hanging down over the roof of the feeder, it managed to push down on the spring-loaded perch, swing around, climb up and sit on the ledge of the seed tray. There it curled its bushy gray tail into a question mark—You gotta problem with that?—and gobbled up black sunflower seeds.

I stepped outside to shoo it away, but in a short while, the squirrel was trying once again to remember the combination of acrobatic moves that had been so rewarding. No luck, at first. Next morning, I looked out the window and discovered it happily munching away again at the feeder.

At first, I was annoyed. But I was also impressed. That was one smart squirrel! Clearly, it was capable of learning from trial and error to get the reward—just like a lab rat learning how to push the right levers to get sugar water.

Since then, however, I haven’t noticed the wily squirrel at the feeder (which doesn’t mean it hasn’t been there). Birds continue to visit, so at least I know there’s still plenty of seed left.

Meanwhile, I’ve been learning some new tricks of my own, out of necessity, since my hand surgery a couple of weeks ago.

For years, I’ve been cutting bandages in half, the long way, for dressing my digital ulcers. I lap and contour them over my finger tips, then secure them in place with a full bandage wrapped around the finger. And I’ve always used a pair of cuticle scissors to cut the bandages. They’re small and sharp and light to handle.

But with my right hand out of commission for well over a week, I needed to recruit some help. My left hand just isn’t as coordinated, and I couldn’t cut the bandages. So I asked Al to do it for me. Another time, when he was at work, I asked Emily, who is home for the summer, for assistance.

Both followed my instructions—but both also inspired shortcuts that I had never considered. Al devised an easier way to cut the bandages—just shy of the peel-open end—so you can peel the wrapper and release both halves at the same time, instead of having to peel each half bandage separately.

Both Al and Em asked me why I insisted on using the cuticle scissors. I had to admit, they don’t cut a straight line very easily and can get stuck in the adhesive. Also, I realized, the reason I can’t use them right now is the holes in the handle are too small and press against my thumb sutures. So I fished out a spare pare of rubber-handled kitchen sheers from the junk drawer and tried them out. Voila! Easy, painless and quick way to cut my bandages in a snap, even with my healing right hand.

Which brings me back to the wily squirrel.

It’s so easy to get stuck in one way of doing things, even when the approach really is not working all that well. You can keep on looking at a problem the same way, circle round and round, trudge along. Or you can stand on your head and open your mind to a new perspective. Even if you’re not an acrobat—or a squirrel—the view is worth the effort.

Image Credit: Piotr Ciuchta

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.