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Reflections on the Messy Complexity of Chronicity

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Home Alone

Evelyn Herwitz · May 28, 2019 · Leave a Comment

Al is away this week, in Israel, volunteering on an archeological dig. It’s a dream he’s had for at least a year, and he’s having the time of his life. It’s also an activity that I cannot share. We agreed that my hands are simply not capable of the sifting and digging involved. There’s a heat wave there, with temperatures over 100 degrees Fahrenheit by afternoon. The group has to get up by 4:00 in the morning to arrive at the dig site by 6:00. Work for the day finishes by noon, to avoid the worst of the brutal sun. Not my kind of schedule.

So I’m very glad that we were able to make this work for him. And fine being here on my own. But this is the longest stretch we’ve been apart—nine days—in six years, the last time involving another trip he made to Israel to visit our older daughter when she was living in Tel Aviv.

It’s an adjustment. I have good friends and neighbors that I know I can count on if I need any help. But I’m not about to call for assistance with all the little ways that Al fills in for my hands on a daily basis.

On Monday morning, for instance, the ants decided Memorial Day was the perfect time to march into my office, which is a renovated porch. The inner wall is the back of our chimney, and I noticed a tell-tale pile of fine dirt along one edge where the brick meets the carpet. A few industrious, tiny brown ants were scurrying hither and yon. There were also a few flying ants (not termites, I checked) that had chosen this very sunny day to flit about.

This is an annual spring phenomenon, so I was more annoyed than surprised. I brought up the portable vacuum from the basement, put the hose pieces together carefully so as not to bang my fingers, and sucked up the dirt (and a few ants, no doubt), then sprayed some Raid around the base of the brick wall.

The next problem, once the ants appeared vanquished (I won’t know for a few days if the swarm is over), was dealing with the fumes from the insecticide. I had a lot of writing to do, and I didn’t want to be forced out of my office by the smell (and sitting with those chemicals all day). Only problem is that the sliding door to our deck in my office is hard to open, but even harder for me to latch shut. Al always does this for me. So that option was out.

There is a bay window that has two panels you open with a crank. I never open them, because the cranks are not easy for me to manipulate. But I didn’t really have a choice. I cranked one window a few turns, only to realize that the top was stuck shut. So I cranked it closed and tried the other side. Same problem. The only other window in my office has no screen, and I couldn’t force it open, anyway.

As they say, necessity is the mother of invention. Out I went, into our side yard, armed with a tack hammer, planning to use its pronged end to leverage open the upper half of the window. I didn’t want to damage the vinyl frame, so I worked my tool carefully up the length of the stuck edge. It only took a few easy tugs, and the window opened its full length. I must admit, I was pretty proud of myself.

I spent the rest of the day writing, with plenty of fresh air and no more ant activity. The only problem with the open window on a sunny holiday was that my next-door neighbor, whom I rarely hear, was out gardening for several hours, chatting with some other folks who were helping or visiting, I couldn’t quite tell. Certainly her right, on a beautiful day, but (grumble, grumble) I would have preferred less of a distraction.

This is where working in a newsroom years ago comes in handy. I can still screen out other people’s conversations when I’m deep into my writing. And that’s basically what I did. By the time I came up for air, it was after 6:00 p.m. I made good progress. When I cranked the window, it closed easily.

I’m leaving the vacuum upstairs until I’m sure the ants are gone. I’m hoping that’s the worst of my problems this week. (Friday morning, the day before Al left, he discovered that our hot water tank in the basement was leaking, a problem that involved a seven hour plumber’s visit, a new tank, and a lot of money. Fortunately this happened while Al was still here, or I would have been a lot more upset.)

My next challenge: taking out the garbage without screwing up my hands or breaking the bag. I think I can handle it. But the recycling can wait until Al gets home.

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. Please view Privacy Policy here.

Image: Vlad Tchompalov

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

On the Town

Evelyn Herwitz · May 14, 2019 · 1 Comment

I did a lot of walking last week, through and beneath the streets of Manhattan. The first half of the trip was business, the second half, pleasure—spending time with my sister to celebrate our birthdays, which are three weeks apart. And celebrate, we did.

From dinner at Ellen’s Stardust Diner, where the waitstaff are all Broadway hopefuls who belt out show tunes, to a walking tour of SOHO, Little Italy and Chinatown; from a lovely stroll up the High Line to a gourmet dinner and an outstanding performance of To Kill a Mockingbird—we had a great time. The weather was beautiful, for the most part. Our hotel off Times Square was surprisingly quiet. We discovered an excellent diner for breakfast and another for some of the best apple strudel I’ve ever tasted. And we started brainstorming our next trip together.

I’m happy to report that my new sneakers worked out pretty well. My feet certainly got tired, but not as tired as they usually do, and without significant neuropathy. Also notable: as I schlepped through the subway, to and from commuter rail, New Yorkers helped to carry my carry-on up and down steep staircases. Without my ever having to ask. Angels are everywhere.

Along the way, I enjoyed wonderful art, on the street and at the Met. Here’s a sampling for your viewing pleasure:

Art Deco with words for our times at Rockefeller Center
Also seen at Rockefeller Center
In front of 30 Rock
Street art in SOHO
Artistic and delicious pastry at Ferrara in Little Italy
Statue of Chang Kai Shek in Chinatown
Street art across from the Whitney Museum entrance to the High Line
Gardening on the High Line
High Line mural
Art Deco murals and design at the Hotel Edison
The Beatle’s original instruments at the Met’s “Play It Loud” exhibit . . .
. . . and some very decorative guitars
Berlin artist Alicja Kwade’s “ParaPivot” rooftop installation at the Met . . .
. . . and a spectacular view of the NYC skyline beyond Central Park

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. Please view Privacy Policy here.

 

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

‘Tis the Season

Evelyn Herwitz · May 7, 2019 · Leave a Comment

April showers (and we’ve had plenty) certainly bring May flowers in my neighborhood. White-blossomed cherry trees and cream-colored callery pears, fuchsia magnolias and pink weeping cherries, along with maples unfurling pale green and purple leaves, grace sidewalks and lawns. White and violet violets speckle lawns that grow lusher by the day. The air smells delightful. With all the rain of late, pollen is subdued, and I haven’t started sneezing, yet.

In keeping with the season, another sign of spring has emerged: I have an infected ulcer in my left thumb. This spiked suddenly last Monday. Fortunately, it’s responding to antibiotics, which seem to be a perennial part of my world at this time of year. A good thing, because I’m traveling this week to New York for a mix of business and pleasure.

As my thumb became irritated, I wondered if I’d aggravated it by typing. Then I realized that I never use it to type. I’ve adapted to so many finger injuries over the decades that I automatically compensate for fingers that can’t comfortably or effectively strike the keys. Which made me wonder: How many fingers am I actually using to touch-type?

This is a bit like asking a centipede how it walks. I really have to stop and notice what I’m doing automatically, which can lead to more typos. But the answer is this: I use my pinky and ring fingers on my left hand, and my thumb, ring finger and pinky on my right. And I can still type quickly enough so that my thoughts translate almost immediately to the computer screen. It helps, significantly, to use an Apple “chiclet” keyboard, which has nearly flat keys with an easy touch, and a minimal rise so it’s easy on my wrists.

When my hands fell apart with severe ulcers two years ago (also in the spring), I learned to use Dragon dictation software to write. It was certainly a big help and enabled me to keep writing. But dictation taps a different part of the brain than writing brain-to-hands, and I will keep typing, even with only five fingers, as long as I can, because it is simply faster and more intuitive.

And so, I am dashing off this entry before I leave on my travels. Looking forward to fresh adventures—and to seeing how the flowers have grow when I come home.

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. Please view Privacy Policy here.

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Filed Under: Body, Mind, Sight, Smell, Touch Tagged With: finger ulcers, hands, managing chronic disease, resilience, travel

65 and 20

Evelyn Herwitz · April 23, 2019 · 2 Comments

On Thursday I turned 65. And today marks the 20th anniversary of my mother’s death. Two milestones linked by memory and blooms.

Last week, in a burst of warmth and wet, all the trees unfurled their chartreuse buds, crabapples and weeping cherries blushed, forsythias gleamed. This is often nature’s gift near my birthday, the sudden, welcome spray of pastels. Winter’s subtle grays are forgotten, and the earth smells sweet.

I spent much of my birthday cooking, with Al as sous chef, for our Passover seder Friday night. The prospect had felt daunting, and less than welcome as a way to mark my 65th, but it turned out to be a lot of fun. I was simply in a good mood. We enjoyed each other’s company, preparing each course at a relaxed pace. Midday, we broke for lunch out, and Al—always the master of surprise—wrapped up our meal with a trip to a wonderful jewelry store, with an invitation to pick out whatever I wanted. Later, when all the cooking was done and the kitchen cleaned, we went out again for a birthday dinner. Throughout the day, I received calls from family and best wishes from friends. I felt thoroughly celebrated and well prepared for the holiday, renewed.

On my 45th birthday, days before my mother’s death in 1999, we spoke on the phone. She was in good spirits because my sister and her family were visiting. A rare and aggressive form of thyroid cancer had appeared suddenly in December, when she brushed a hair from her neck and first noticed a lump. The disease took her life in four months. I had visited numerous times during that winter and early spring and was with her when she passed. In those last moments, as she sipped her final breaths, I had the distinct feeling that she was simply slipping out of her body to somewhere unknown.

In many ways, there was much I did not know about her and have only learned since her death. For a woman of her generation and German heritage, motherhood was a mix of compassion and authority. We had many long talks during my childhood and adolescence, and I learned to be a good listener from her example. But she always maintained privacy about her innermost thoughts and feelings, and revealed little of her own formative years, beyond certain familiar stories of life in Berlin during the rise of the Nazis and her transition to embracing her American citizenship. With twenty years’ perspective, I now understand that the past was simply a place she wanted to leave behind.

Since Al and I traveled to Prague and Berlin as part of our summer vacation, to honor the memory of my great grandparents who were murdered in the Holocaust, I have been thinking of her more, wondering what she really felt during that time, wishing I could ask her. Miraculously, last fall, out of the blue, I heard from a cousin I have never met, whose nonagenarian mother is still alive and able. At the end of May, I am going to visit them in Florida. And so, I may get some answers from the woman who is my mother’s first cousin and the last living link to her generation. This is a great, unexpected blessing.

When we laid my mother to rest, a white cherry sapling had recently been planted in that section of the cemetery, in ground softened by spring’s thaw. It was too young to blossom, then, but casts ample shade near her and my father’s grave today. Its size always surprises me when I visit, a marker of how much time has passed. I like to think, even as she tried to bury her past, that my mother would be pleased that I am reclaiming it, not only for myself through my travels and studying German, but also for my daughters who barely knew her as children.

How much do we ever know our parents, let alone ourselves? I will give the last word to Rainer Maria Rilke, from Requiem for a Friend (The Selected Poetry of Rainer Maria Rilke, trans Stephen Mitchell):

I have my dead, and I have let them go,
and was amazed to see them so contented,
so soon at home in being dead, so cheerful,
so unlike their reputations. Only you
return; brush past me, loiter, try to knock
against something; so that the sound
reveals your presence. . . .

Ich habe Tote, und ich ließ sie hin
und war erstaunt, sie so getrost zu sehn,
so rasch zuhaus im Totsein, so gerecht,
so anders als ihr Ruf. Nur du, du kehrst
zurück; du streifst mich, du gehst um, du willst
an etwas stoßen, daß es klingt von dir
und dich verrät. . . .

 

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. Please view Privacy Policy here.

Image: Paul Herwitz

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

Mud Season

Evelyn Herwitz · April 9, 2019 · Leave a Comment

It’s getting warmer and muckier here in Massachusetts—but not yet so consistently warm that the bugs are swarming. So, perfect weather for a walk in the woods this past weekend, albeit stepping carefully around muddy tracks and vernal pools. Life’s cycle of renewal always boosts my spirits in the spring. I hope it does for you, too. Enjoy.

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. Please view Privacy Policy here.

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Filed Under: Body, Hearing, Mind, Sight, Smell, Touch Tagged With: body-mind balance, mindfulness, resilience

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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…

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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.

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