Flimsy by Design

The sugar maples in our neighborhood have finally burst into flaming colors. They’re about a week behind schedule this year, slower to change due to warmer than normal temperatures.

Their brightness surprises, given the mild winter and dry summer. We’ve been at a Stage 3 Drought Emergency here in Central Massachusetts since early September, meaning no outdoor water use. Our reservoirs are at nearly half-capacity, and the city is buying water from Boston’s reservoir network to make up the difference.

img_2443But the trees have adjusted. Across the street from our home, our neighbor’s sugar maple has turned a brilliant gold. Others are bright orange, crimson, or my favorite—a mix of all three. We’ve been graced with another mild week, just right for taking a walk, scuffling through freshly fallen leaves, or sitting in our sukkah.

Our sukkah is a flimsy structure by design, with a bare wooden frame, sheets for walls and pine boughs for a roof, through which you can see the stars at night. During the weeklong Festival of Sukkot, which follows shortly after Yom Kippur, we eat our meals in the sukkah. In years past, when the girls were young, there was always a night when they’d sleep under the pine boughs with Al. (Too hard on my joints, and often too cold, to join them.)

I love to sit in our sukkah. The pine smells so lovely, like the middle of a forest, and the gourds we hang add a splash of fall colors and whimsy. There is something oddly reassuring about the sukkah’s flimsiness—a reminder that change, transition, temporality are the ultimate constants in life, that possessions don’t really matter all that much. Rather, what counts are the people we love who share our space, and the creative life force—for me, God—that nurtures and sustains us.   

I always find it fitting that Sukkot falls when the trees are turning in New England. How amazing that the transition from season to season, from vivid green to bare branches, is so stunningly beautiful. The leaves don’t simply shrivel up and drop to the ground as crumbled dust. They go out in a blaze of glory.

The prospect of change is so often frightening. What will we lose? How will we survive? Why must we give up the comfort of the familiar? Sitting in my sukkah, I try to remind myself that the only reality is the present moment, security is a state of mind, and transitions are opportunities to learn something new. However uncertain and troubling the future may seem today, I have the capacity to respond and adapt on my own terms.

And, oh, yes, change can be surprisingly beautiful, if you know where to look.

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.


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.


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.


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. . . .








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.

Agility Test

It’s getting harder and harder to keep a positive attitude these days. This past weekend’s bombings in NYC and New Jersey, the stabbing in Minnesota, the hateful, cynical rhetoric of this presidential election campaign—I’ve had more than my share of insomnia recently. One day last week I had trouble focusing on my work. I know I need to turn off the news, but I can’t seem to break away from it all. My fight or flight instincts are on overdrive—not a good state of mind, with real potential to impact my health.

img_2383So I was glad for a great diversion on Monday that gave some renewed perspective. I  took the day off from work to drive up to New Hampshire (even as I was listening to updates on the NYC bomber manhunt) for the Bearded Collie Club of America’s National Specialty Agility Trial. A good friend of mine has two beardies—bright, exuberant, long-haired dogs with herding instincts and personality plus—and she is seriously involved in championship competitions.

I’ve never been to a dog competition, let alone one in agility, which involves leading the beardie through a course of hurdles, fabric tunnels, bridges, obstacles and teeter-totters. The rules and scoring are complicated. Preparation requires hours and hours of practice and an ocean of patience. The dogs are very smart and clearly have minds of their own. While they can run with amazing speed and precision, they can also zoom around in circles, run off to the side of the arena to explore, sniff the judge standing in the middle of the course, jump up on hind legs in excitement and bark like crazy.

Such was my friend’s experience when she ran her dog, Mac, through his first event. Despite many perfect practice sessions in recent months, as well as past successes on the ladder to championship ranking, this morning Mac decided to create his own version of the course. He ran this way and that, refused to run the course in order, skipped some of the hurdles, all the while jumping and barking his commentary. A discouraging experience, to say the least.

Plenty of the other dogs did their own thing, too. “How do you get another creature to do what you want?” I mused. “When I figure that one out, I’ll let you know,” quipped my friend. Watching everyone else’s mishaps—even at the national championship level, these dogs are a challenge to control and can be quite comical—we had some good laughs, and she regained her sense of humor and perspective.

And, I’m happy to report, Mac redeemed himself. Later in the afternoon, he ran an event that involved jumping over a lot of hurdles, running over a teeter-totter and threading through a “weaving” obstacle (running back and forth through a row of poles, like a slalom, but on level ground) so perfectly that he took the blue ribbon.

Clearly, we agreed, he could do it if he wanted to. It was all a matter of focus and his emotional reaction to the situation at hand.

It’s no wonder that the dog-trainer relationship is such an intimate partnership. We have so much in common.

On my drive home, as I caught up with the latest political news, I thought about how the narrative we tell ourselves has such an impact on our ability to stay on track and handle life’s many hurdles and obstacles. It’s all so easy to fall prey to the doomsaying that dominates the news media. There are real, substantive reasons for concern and even worry about what’s happening and what will happen next. But the future, by definition, is always an unknown.

We can choose to believe the worst and let our fears run us in circles. Or we can choose to believe that whatever comes, we will confront it with focus, courage and commitment to stay the course of living a life true to our values and all we hold dear.

I’m going to do my best to remember that as Election Day approaches.

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.



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.

Flights of Fancy

What better way to mark the official end of summer this Labor Day than to surround yourself with butterflies? That’s what Emily and I decided to do Monday afternoon after a hectic weekend of social events that included hosting a large, agreeable dog for a young couple who were getting married, friends of Mindi, who was home for the festivities and a big move to a new apartment.

The fall transition is most certainly upon us. But inside The Butterfly Place in Westford, Mass., it was a precious ahhh moment. Enjoy, Dear Reader . . .








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.

Just Add Water

A little over two years ago, Al and I rearranged some art work in our living room to hang a beautiful, large painting over our couch. And for all that time, two unsightly holes in the wall flanked the painting—reminders of the pictures that had preceded it. They weren’t just simple nail holes; no, the paint had flaked off to reveal the plaster beneath.

IMG_2298It was one of those little annoyances you forget about, ignore, live with—nothing earth-shattering, but an irritating reminder of neglected home maintenance. I had pushed it out of my head as something my hands couldn’t handle.

Until Sunday. I woke up with a plan: I was going to fix the holes myself. Al was working at the hospital, and I wanted to surprise him.

Step One was to locate the wall paint. Sure enough, there sat a can on a shelf in the basement, unopened since 1999 when we moved into our home. I brought it upstairs, set it on some newspaper and pried open the top with a screw driver.

Our living room is painted brick red. What was left of the paint, about a third of a can, was purple. Or so it appeared. I found a dowel and began stirring. The red emerged as a marbled swirl, eventually blending to make a perfect match to the walls. It was thick, but viscous enough to paint.

Step Two was an Internet search for how to patch a hole in the wall, followed by a trip to the local hardware store. Channeling my father, who was Mr. Fix-it and had a very precise way of approaching any task, I bought spackle, a putty knife, a plastic drop cloth, a tack cloth and a sanding sponge that would be easy to hold. I considered buying paint thinner but decided it would be a waste of money for the small amount of paint that I needed.

At home, I gathered all my supplies, including some small sponge brushes from another project. To my surprise, I was able to move the couch away from the wall without much exertion. Behind it, there were two gashes in the wall where the couch had rubbed away paint, so i figured I could practice on those hidden spots, first.

Drop cloth in place, spackle container lid removed (with a bit of a struggle), I was ready to go. I scraped off the chipped paint, sanded the edges to make a smooth surface, tacked away the dust and dipped my putty knife into the spackle. And smiled. It was fun! The spackle spread as easily as cream cheese. Within ten minutes, I had two holes and two gashes neatly prepped for painting.

The spackle was supposed to dry in about a half hour, so I set out for a nice walk around the neighborhood. Upon my return, it was time to pour some paint into a plastic cup and finish the job.

However, I realized when I reopened the paint can that I probably hadn’t sealed the lid quite tightly enough. It was even thicker than previously. I stirred some more and poured a small amount into the cup. I stirred it again. I wished I had bought the thinner, but it was too late to go back to the store. So I set out to paint.

And here is where my project got a little messy. The paint had tiny little globs in it, which balled up on the wall. I had to swipe them off with a series of sponge brushes, over and over to catch them all. Then I realized that the spackle had not dried in one of the deeper holes and had sunk a bit. More spackle, more waiting. Grrrrrr. I wanted to be finished, and I wanted it to be perfect!

About this point, Emily came downstairs to investigate my progress. I groused about the clumping paint and my failure to get any thinner.

“Did you look at the label on the can?” she asked.

Duh. I had to admit that I hadn’t. I’d just assumed it was oil-based from the purple oily layer when I first opened the can. But, sure enough, the paint was acrylic. All it needed was a little water mixed in for a nice, silky consistency.

Em encouraged me to wait long enough to let the spackle really dry this time before I tested it. She promised to distract Al if he came home before I was through. Which is exactly what happened as I laid down the final swath of paint over what had been the second hole.

“I have a surprise for you!” I said, walking into the kitchen with my brush and paint cup. And, indeed, he was surprised—and impressed—not only that the holes were finally repaired, but that I had done it myself. I was, too.

The paint has fully dried, now. If you know where to look, you can see traces of my handy-work. But it blends in well enough. And at long last, the painting looks fully at home on its brick red wall. Best of all, I realized that my hands can take on a light home repair project, with good results. As long as I read all the labels.

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.

Speak for Yourself

"Cat and Mouse" (1975) by Robert A. Nelson, on exhibit at the Worcester Art MuseumOne evening last week, during a seemingly endless stretch of hot, muggy days, I was reading at the dining room table with the widows wide open when I heard a cat crying outside.

Our neighbors have two cats, and they often prowl around our back yard now that Ginger is gone. I looked out the window and saw the yellow tabby curled contentedly in their upstairs window, enjoying the meager breeze, silent.

Mrroww, mrroww, mrowww, cried the mystery cat.

Where could it be? This didn’t sound like your ordinary cat commentary. I went out the kitchen door and looked around. No cat.

Mrroww, mrroww, mrowww, cried the mystery cat.

I walked up the path to our front drive. No cat. I walked back to the kitchen door. No cat.

Mrroww, mrroww, mrowww, cried the mystery cat.

Then I realized that the cry seemed to be coming from our garage. I opened the back door. There was our neighbor’s white cat, hiding among my older daughter’s furniture, in storage until she moves to a new apartment in September.

It did not take much to coax the cat out of its self-imposed prison. I have absolutely no idea how it got in, since I’m not parking in the garage while the furniture is there. A mystery, indeed.

The cat ran back home, and I was quite thankful that I’d been around to hear its cry.

So, you may wonder, what does this have to do with living with scleroderma? Well, Dear Reader, it’s all about speaking out when you need help. That kitty knew how to get attention (how long it waited to complain, I have no idea—it probably snuck inside somehow to escape the heat) and kept asking for attention until someone paid attention.

Speaking up for yourself when you need help, without any shame or embarrassment, is a crucial skill when you live with any kind of disability, including the physical limitations that are part and parcel of scleroderma. In this Sunday’s New York Times, Rosemarie Garland Thomson articulates it beautifully in her essay, “Becoming Disabled”:

As we manage our bodies in environments not built for them, the social barriers can sometimes be more awkward than the physical ones. Confused responses to racial or gender categories can provoke the question “What are you?” Whereas disability interrogations are “What’s wrong with you?” Before I learned about disability rights and disability pride, which I came to by way of the women’s movement, I always squirmed out a shame-filled, “I was born this way.” Now I’m likely to begin one of these uncomfortable encounters with, “And these are the accommodations I need.” This is a claim to inclusion and right to access resources. . . .

Becoming disabled demands learning how to live effectively as a person with disabilities, not just living as a disabled person trying to become nondisabled. It also demands the awareness and cooperation of others who don’t experience these challenges. Becoming disabled means moving from isolation to community, from ignorance to knowledge about who we are, from exclusion to access, and from shame to pride.

Unlike Garland Thomson, I wasn’t born with my disabilities. I can still remember what it felt like (barely, it’s been so many decades) to have fully functioning hands. It’s taken me many years of living with scleroderma to assert myself with strangers when I need help. But I’m no longer afraid or ashamed to ask. Much as I want to do for myself, I also realize my limitations. It’s good to know, more often than not, there’s someone willing to open that door, pop that tab on a soda can, or hoist that carry-on bag to the overhead luggage rack—who’s glad to be of assistance.

If a cat knows how to get the help it needs, when it needs it, then surely, so can I.

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: “Cat and Mouse” (1975) by Robert A. Nelson, on exhibit at the Worcester Art Museum

Gold Standard

All those perfect bodies. It’s impossible to watch the Olympics without marveling. Sculpted muscles, tight abs, toned thighs—these premier athletes look every bit like the marble statues we saw everywhere in Italy this summer—except, of course, they are living, breathing humans who accomplish seemingly superhuman feats of strength, coordination, balance, speed, grace.

the-athlet-1423333-640x480The Summer Olympics, especially, always set me daydreaming—what would it have been like if I’d had the ability and training to compete as a gymnast when I was that young and healthy? What does it feel like to be Simone Biles, dancing, bounding and twirling through the air, always landing soundly on her feet?

The gold medalists, especially those who’ve distinguished themselves as Biles has in gymnastics with her extraordinary athletic prowess, are walking Rorschach tests for our imaginations—as well as our biases.

There has been plenty of press regarding the ignorant comments by NBC sportscaster Al Trautwig about Biles’s parents—her biological grandparents, who adopted Simone and her sister when they were very young. “They may be mom and dad but they are NOT her parents,” he tweeted last Sunday. Those comments raised a huge furor, rightly so. As an adoptive parent of our older daughter, I found the initial reporting offensive and appalling. I was very glad that Trautwig not only retracted his statements eventually, but also apologized. Shared DNA is not the defining ingredient of parenthood.

But there is another bias projected onto Biles that has not been flagged—and that involves how she is described in terms of height. Like many female gymnasts, Simone Biles is petite. She stands 4-feet-8-inches tall.

For some reason, however, the sportscasters are compelled to describe her as a “4-foot-8-inch giant.” This is intended as high praise—small in stature, but a huge presence. I get it.

However, my younger daughter stands 4-feet-7-inches tall, and over many years, we have discussed the challenges of living in a society that tends to be dismissive of individuals who are shorter than average. Short stature is associated with being childlike, being “cute” (as in not taken seriously), being less capable of leadership. It’s an insidious stereotype that has no more to do with what an individual is capable of than the color of her skin, religion, gender identity, physical limitations or any other distinguishing characteristic.

By describing Biles as a giant, the sports world is underscoring the perceived irony of such a small woman looming so large over other gymnasts. The implied assumption: better-than equals bigger-than. But why isn’t it enough for Simone Biles to be the world’s greatest female gymnast—period? Why does her height have to figure into her sobriquet? Does anyone dwell on swimmer Michael Phelps’s height when describing his amazing 23 gold medal record? Of course not. He’s 6-feet-4-inches tall.

The Olympics are all about achieving athletic perfection. Wouldn’t it be wonderful if those who set the bar for how we talk about these breathtaking accomplishments strived to set a gold-medal standard for appreciating the precious uniqueness of each individual—rather than marveling at how they’ve defied expectations based on stereotypes. Imagine how that might shift dialogue and perception far beyond two weeks every other Olympic year.

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: Oliver Gruener