• Mind
  • Body
  • Sight
  • Hearing
  • Smell
  • Taste
  • Touch
  • Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar

Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

  • Home
  • About
    • Privacy Policy
  • What Is Scleroderma?
  • Resources
  • Show Search
Hide Search

Hearing

Gold Standard

Evelyn Herwitz · August 16, 2016 · 2 Comments

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

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight Tagged With: body image, body-mind balance, resilience

Immersion

Evelyn Herwitz · August 2, 2016 · 6 Comments

Could it really be that Al and I were in Pisa, Italy, on Sunday? And in Venice, Florence and the Isle of Elba over the preceding two-and-a-half weeks? Air travel makes it possible to be halfway around the world in the morning and back home late the same night (depending on which direction you’re traveling). But my mind is somewhere in-between. And I want to hold onto the memories of our journey for as long as I can.

IMG_1432

Venice has been a lifelong dream—ever since my father showed me a series of small, black-and-white photos of the canals from his military service in Italy during World War II. Those images made a big impression on me as a little girl. So much so that in first grade, when I had to answer a test question, “True or False, All cities have streets,” I marked it false. My teacher, Miss Kelly, called me up to her desk and asked me why. I explained that Venice has canals. She laughed, and she didn’t mark my answer wrong.

IMG_1462

Whatever I imagined as a child, however, could not compare to the wonder of Venice—a magic puzzle box of winding pedestrian passageways, bridges and canals. Around each corner is yet another stunning, surprising view. We heard jazz and Vivaldi, saw fireworks and Kandinsky, ate delicious meals, drank wonderful wines, and continually got lost and found. We stayed six days, and it wasn’t enough.

IMG_1700

For four days in Florence, we marveled at art, ancient to modern. I could have stared at Botticelli’s The Birth of Venus for hours, were it not for the crowds in the Uffizi—for all the images I’ve seen, and the memes, there is nothing like witnessing a major art work in person. Michelangelo’s David, too, is breathtaking. So is the view of the city and Tuscan hills from Forte di Belevedere, across the Arno, and so much more.

IMG_1755

Our final stop, Pisa, has also been a source of intrigue since childhood. My sister and I had a wall map of the ancient world when we were young, which included a small drawing of the Leaning Tower to indicate where Pisa is located in Italy. How could a building lean like that and still stand? I wondered.

IMG_2005

Well, now I’ve seen it with my own eyes. It does lean and stay standing (thanks to some extraordinary feats of engineering), and the architecture is exquisite. There is much more to the city, of course, which is full of surprises—from the serene Botanical Garden of the University of Pisa to an exhibition of book illustrations by Roberto Innocenti at the Palazzo Blu.

IMG_2087

But our favorite adventure was our four days on Elba, an island off the west coast of Italy, part of the Tuscan Archipelago. Truly, one of the most, if not the most beautiful place I have ever seen. Panoramic mountain views overlooking azure seas, crystal clear water, beautiful hiking trails, salmon sunsets. It was a vacation in the midst of our vacation—calming, quiet, a time to get away from the crowds and contemplate.  

IMG_1883

And, best of all, I went swimming in the Mediterranean—the first time I have been able to swim in at least a decade. The water was warm and so clear and clean that, for once, I was not worried about risking an infection in my fingers. Indeed, the salt water seemed actually to help my ulcers to heal.

IMG_1896

All of this, plus the fact that I was able to tolerate the long plane rides, walk and walk in intense heat (high 90s most of the trip), eat new foods, get enough sleep most nights, and avoid any scleroderma complications—all of this, on top of being able to swing the trip in the first place, was a great gift.

IMG_2195

I’m glad to be back home, where the scenery is familiar. I know where to find just about everything in our house. Family and friends are close by. It was very good to sleep in our own bed once again. But there is so much more of the world to see. As long as we both are healthy enough and able, we hope to keep on traveling. My “Next Trip” list is already in the works.

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.

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Smell, Taste, Touch

Vacation Override

Evelyn Herwitz · July 12, 2016 · Leave a Comment

It’s been a very busy few weeks since the beginning of July. Al and I leave soon for our first-ever trip to Italy, and to prepare, I’ve been drilling through a month’s work of client projects in 10 days. Usually I pace myself very carefully and keep most evenings and weekends free of work—to manage my energy and keep a good work-life balance. But freelancers don’t get paid vacations, so late hours were necessary to make sure I met my clients’ needs and our family budget for the rest of July.

pills-1417417-639x462Now it’s done, and I have to concentrate on final trip preparations. (It’s probably been good to have had so much work to do—a distraction from inevitable nervousness about how I’ll hold up during a long haul trip.) Tops on the priority list is making sure I have enough of my prescription medication to last the journey.

Only one problem: the timing of my most recent refills works out to being a few pills short for when we’re out of the country. Three prescriptions were affected. So last Friday, I went to my pharmacy and asked what to do. They advised me to call my health plan’s pharmacy and ask about a vacation override. Since we would be abroad, there was a good chance I could get the refills authorized.

Monday morning I called CVS Caremark and explained the situation. The helpful person on the other end of the line told me to submit the refills at the pharmacy, which would be rejected as a premature request, and then have the pharmacy call them for the override, which, fortunately, our plan covers. So after I finally finished all my work, I went down to my local CVS on Monday afternoon.

And here’s where the situation got complicated. Two of the three scrips got through the process without a hitch. But a third hit a snag. For whatever reason, the insurer suddenly decided I needed a prior authorization for this particular medication, not only to get the vacation override, but also to get any refill for a med I’ve had authorized for years. It made absolutely no sense.

But this is how health insurance works these days.

So back home I went and wrote an email to my BMC rheumatologist’s nurse who handles refills and rescued me from yet another refill emergency last week—when I tried to refill an essential medication, I was suddenly told that I was correct that refills remained on the scrip, but, unbeknownst to me, despite checking last month, the scrip had expired. Unbelievable. She worked her magic and the prescription was on its way from a specialty pharmacy that afternoon. It arrived on time on Saturday.

No way to know if we’ll be able to get through the prior authorization process for this med before we leave, but if anyone can make it happen, she can. And if it takes longer than I can wait, I’ll just have to skip a few doses every other day at the end of the trip. Certainly not ideal, but not life threatening, either. Fortunately. This is a pill that helps my hand circulation, but we’ll be in a warm climate, anyway.

Time to get packing. I’ll be taking a vacation from this blog for a few weeks, too. I wish you, Dear Reader, a lovely, restful deep summer (north of the equator—to those of you down under, I hope your winter isn’t harsh). Be well.

Image Credit: Cathy Kaplan

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.

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: managing chronic disease, medication, Raynaud's, resilience, travel, vacation

Handy

Evelyn Herwitz · June 28, 2016 · Leave a Comment

When you live in a home long enough, stuff breaks. A doorknob loosens, a faucet drips, a burner element wears out on the stove, a toilet leaks, a chair leg cracks, a lock fails. The list is endless.

tools-1553469-640x480If you’re handy, fixing stuff around the house can be a satisfying hobby. If you’re not, it’s a cumulative nuisance. And if you can figure out how to fix it but your hands won’t cooperate, it’s truly irritating.

I used to have extraordinary fine motor coordination in my hands and could do just about any kind of detailed manipulations. I watched my father fix all kinds of objects around the house and build bookcases to hold thousands of tomes, and I imagined being able to do the same someday. But now that I have my own home, I can’t do the kinds of repairs that I wish I could because my hands simply won’t cooperate. Al, by his own admission, is not Mr. Fix-It.

So it was with great satisfaction that we finally found a handyman who can do just about any repair for a reasonable price. Our list has been growing for a long time, but the problem that finally drove us to seek him out was the ladder to the attic, which broke about a year ago, making it impossible to access our luggage. We are planning more travel in a few weeks, this time to Italy, and we needed to get up there.

And so, over the past few days, Marc has been fixing stuff: He replaced the ladder, fixed the impossible leaking toilet, repaired the drippy kitchen faucet and spray hose, reattached the spring on the outer front door that fell off the other day, wired a new front light, replaced some shakes that had been bored through by woodpeckers, and mended two broken chairs and the leg on our coffee table.

As these things go, nothing was as simple as it seemed. Bees were investigating the holes bored by the woodpeckers. The toilet needed several adjustments, as did the kitchen faucet. The attic ladder was a challenge because the original door had been built in the wrong place relative to the upstairs hallway and staircase. But Marc figured it out, spicing his efforts with some colorful language that reminded me of my dad’s cursing when things didn’t go right, and demonstrated an admirable ability to sort through the challenges and solve each one.

While he was working here on Monday, I was faced with a different kind of fix-it problem—trying to get the scanner on my printer to work again. I had an important document to scan, and the printer would create the image, but continually refused to save the file. I tried reinstalling the driver twice, only to have the same result. I groused to Marc, who cracked a sympathetic joke.

I was ready to give up and take the document to an office service store, when I took a break for a late lunch. Marc was up in the attic, adjusting the length of the new aluminum ladder after a particularly difficult battle with the old wooden one, which had twisted and tangled in its ancient spring. If he could persist and figure it out, so could I.

So I read through old printer documentation, tried a different way of getting into the scanner software, and—lo and behold, found the problem—a save option that had not been activated. The scanner worked. “I did it!” I shouted to Marc. He cheered.

I may not be able to do what Marc does with fixing stuff with my hands, but I sure learned a good lesson about persistent problem-solving. When he left Monday afternoon, he told me to start making “another little list.” I already have a few items noted down for after we get back.

Image Credit: Ciska Wesselius

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.

 

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: hands, managing chronic disease, mindfulness, resilience

New Tricks

Evelyn Herwitz · June 21, 2016 · 1 Comment

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.

Share this:

  • Share
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
  • Click to share on Facebook (Opens in new window) Facebook
  • Click to share on X (Opens in new window) X
  • Click to share on LinkedIn (Opens in new window) LinkedIn

Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: adaptive tools, body-mind balance, finger ulcers, hands, managing chronic disease, mindfulness, resilience

  • « Go to Previous Page
  • Page 1
  • Interim pages omitted …
  • Page 39
  • Page 40
  • Page 41
  • Page 42
  • Page 43
  • Interim pages omitted …
  • Page 57
  • Go to Next Page »

Primary Sidebar

Subscribe via Email

Enter your email address to subscribe to Living With Scleroderma and receive new posts by email. Subscriptions are free and I never share your address.

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…

Blog Archive

Recent Posts

  • Gutsy
  • What Happened to Your Hands?
  • Drips and Drops
  • Out of Focus
  • Bandage Break

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.

Copyright © 2025 · Daily Dish Pro on Genesis Framework · WordPress · Log in