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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Let It Snow . . . Sort Of

Evelyn Herwitz · November 27, 2018 · Leave a Comment

It’s chilly and damp and just plain yucky outside as I write on Monday evening. I have my legs wrapped in a blanket to ward off the cold, even with the heat on in my home office. I’m wearing sweatpants and two layers of sweaters, plus my wrist warmers. Every so often I take a break to walk around and get my circulation going.

Ah, November in New England. It was brutally cold on Thanksgiving. Fortunately, I only had a short run from the car to our cousins’ front door, and otherwise stayed inside. The weather outlook this week is alternately rainy and chilly, but at least not snowy again for a while. Famous last words.

Every year, around this time, I try to stave off my winter blahs by reading the long range winter weather forecasts. It’s kind of my own version of wondering if the groundhog will see his shadow. Knowledge is power, right? If I know how cold it’s supposed to be, then I can be prepared.

Well, so far, the predictions for the Northeast U.S. are mixed. According to the National Oceanic and Atmospheric Administration (NOAA), we’re supposed to have a warmer than average winter up here. The southern states are supposed to get more precipitation than normal. You can see the whole forecast here.

On the other hand, Boston forecasters are expecting a stormier winter season, drawing on the El Niño effect and historical data. Ugh.

I know, I know. I need to get over it. Whatever comes will come. It’s just the transition is always hard. In any case, I had my snow tires put on last week. At least my car is ready.

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: Emil Vilsek

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: how to stay warm, managing chronic disease, Raynaud's, resilience, winter

Snap Judgment

Evelyn Herwitz · November 20, 2018 · Leave a Comment

Even as I’ve adapted to my “revised” hands a year post-surgery, sometimes they still spring a surprise on me. I was working on a sewing project on Sunday, feeling quite pleased with myself that I could manipulate the fabric, stitch with great accuracy on my sewing machine, serge precisely to finish raw edges, iron and steam as I went along to get the right finish.

Then I noticed some red stuff on the handle of my iron. At first I thought it was just some shmutz from the fabric, which is a reddish brown and tends to shed. Then I looked at my right hand. Sure enough, without realizing it, I had cut the tip on my right ring finger.

Now, this can happen to anyone, I suppose, but for me the issue was that I didn’t feel the cut at all. This is one of my fingers that was partially amputated last fall due to ulcers gone wild, and the nerves at the tip are no longer as sensitive as they once were. Fortunately, the cut was only superficial, and I hadn’t dripped any blood on my project, which would have been a mess. But it was disturbing.

How could I have missed it? As I cleaned and bandaged the finger, I reviewed what I’d been doing in the past hour or so. Then it dawned on me: I have a lot of trouble manipulating pins for this project, because some of the fabric is densely woven and my fingers are now too short to leverage even a long, glass-head pin through all the layers. So I had tried using small binder clips, instead, to hold the pieces together. But I couldn’t pry them open far enough (again, an issue of finger strength), so I used a pair of pliers—and the clip snapped away from the pliers and nipped my finger. Ouch. It smarted, but eased up, so I didn’t think I’d really hurt myself. Apparently, however, that’s what did the damage.

I was able to keep sewing after I took care of the cut (and wiped the blood off the iron handle). I’m very happy with my slow but steady progress. But I realized that I have to be more vigilant when I’m using sharp tools. I may have learned how to use my hands again, but they are simply more fragile than they used to be, and I must pay closer attention to any pain sensations, even muted. Nerves are a first line of defense, to warn us when we’re endangering ourselves—but the sentinels in my fingertips are no longer operating at full strength. Time to call in the reserves.

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, Touch Tagged With: adaptive tools, finger ulcers, hand surgery, hands, managing chronic disease, mindfulness, resilience

The Poppies Grow

Evelyn Herwitz · November 13, 2018 · 6 Comments

Sunday dawned sunny and brisk here, one of those sharp-shadowed November days when the light accentuates every ridge of bark and edge of brick like a finely detailed etching. I bundled up in multiple layers and headed downtown for our city’s annual Veteran’s Day parade, not out of habit, but because this was no ordinary November 11. It marked the 100th anniversary of the end of World War I, and I wanted to be present.

For the past few years years, I have been working on a novel set in the Great War, in 1915, and my research has given me a deep respect for the tremendous sacrifices made during that horrific conflagration, as well as for the ways in which the Treaty of Versailles that redrew post-war boundaries on three continents shaped so many of the geopolitical conflicts that we face today.

Four summers ago, Al and I traveled to Europe so that I could gain a stronger sense of place for my novel. We walked overgrown trenches, witnessed corroded but still live munitions that continue to emerge from Belgian soil (the so-called Iron Harvest), paid respects to row upon row of white grave markers in military cemeteries, discovered delicate red-orange poppies waving in Flanders Fields. They flourish in old battlefields because they favor earth that has been disturbed.

And the earth was disturbed, shredded, pounded to a muddy, barren pulp. Millions upon millions died defending, gaining, losing, regaining mere yards of turf between the trenches. In the end, the so-called peace treaty for the War to End All Wars imposed such economic hardship on Germany for its aggression that Teutonic desire for revenge set the stage for World War II.

I thought about all this as I watched the bag piper stride beneath an archway made of a huge American flag held up by two opposing fire truck ladders, as a handful of aging Marines in their red jackets and caps passed me carrying the Stars and Stripes, as units of JROTC high school students marched by in uniforms, as police rumbled past on motorcycles. The crowd was thin but respectful. A little girl handed me an American flag to wave. My fingers went numb every time I took a picture, because it was just that kind of chilly New England fall day.

The parade culminated at a memorial to World War I veterans that marks one of the entry points to the city’s downtown. I had passed it many times over the years, but never actually entered—a semi-circular granite wall engraved with the names of battles where Americans died in the War’s last year, surrounding a modest plaza with a flagpole. The mayor spoke of local residents who served and died in the War. He drew parallels between then and now and the divisive, dangerous politics of our times. Other city officials made a few remarks and laid a red-white-and-blue wreath at the flagpole’s base. A soldier read In Flanders Fields by John McCrae.

When we were in Belgium, we visited the site of the field dressing station where Lieutenant Colonel McCrae, a Canadian surgeon, artist and poet, saved soldier’s lives and wrote his famous memorial lines. That is where we found the poppies, still growing. They were wild, scattered amidst the high grass, smaller than I had expected.

McCrae’s poem ends thus: “If ye break faith with us who die | We shall not sleep, though poppies grow | In Flanders Fields.” On this centennial, with so much at risk in the world, I hope and pray that we can remember the somber lessons of World War I, the tremendous sacrifice of life, the hardships and grief and loss, and find our way through this difficult time to true and lasting global trust and cooperation for the betterment of all. Nothing less than the future of our planet hangs in the balance.

Poppies in Flanders Fields, Belgium

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, Touch Tagged With: hands, how to stay warm, mindfulness, resilience, travel

Standard Time

Evelyn Herwitz · November 6, 2018 · Leave a Comment

So, we set the clocks back this weekend, and the days feel much shorter—even though the amount of daylight is actually only a few minutes less than it was before. It’s all relative. How you perceive length of days depends on  how the rising sun and impending darkness encircle your waking, working, active hours.

Even as I know this, the shift to an earlier sunset always feels claustrophobic. My body has to adjust. The older I get, the less I’m convinced that switching the clocks is really necessary. It’s an artificial imposition on nature’s true rhythms.

But this is just howling at the moon. I try to remind myself that our reversion to standard time also means that in a few weeks we will arrive at the winter solstice, and the days will grow longer, once again.

The earth spins, the pendulum swings, the tides ebb and flow. Election Day has finally arrived, and tomorrow, whatever the outcome, the sun will still rise and set. I try to remind myself that the longest nights eventually give way to more daylight. I try to remind myself that change is the only constant.

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: United States seen from orbit photo by NASA

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

What I Want

Evelyn Herwitz · October 30, 2018 · 4 Comments

I want to write something positive, but I’m having a hard time. The events of the past week and weekend are weighing heavily on my mind, and to pretend otherwise would be disingenuous.

Back in the ’70s, when I was in graduate school at Carnegie-Mellon in Pittsburgh, I lived in Squirrel Hill. I was not involved in Jewish life at that time, but I remember the community fondly, as an intimate, comfortable urban neighborhood where I felt safe walking any time of day or night. I received my master’s degree in public management and policy analysis from what is now the Heinz College at CMU, at a graduation ceremony in a synagogue near the university—not the site of Saturday’s massacre, but a few blocks from there.

It is heartbreaking to comprehend what happened at the Tree of Life Congregation Synagogue on Shabbat. Just as it’s terrifying to comprehend that a dozen-plus pipe bombs were sent to critics of the president last week. Thank goodness the bombs never exploded and that the alleged bomber was quickly apprehended. So much violence that the fatal Kentucky shooting last Wednesday of two people of color by a white man who had been unable to enter, and presumably attack, a nearby, predominantly black church was barely noted by the national media

I could tie these events and so much other bad news (climate change, anyone?) thematically to the issue of stress and how it affects health, so that I could relate it more directly to the focus of this blog. But what’s happening to us in America today is about much more than that. So much that I have taken for granted about our democracy feels like it is unravelling. It seems as if we have reached some monstrous tipping point, and that more blood will be shed before we get through these dark times.

I try to remind myself that I grew up in the ’60s, when there were riots in the streets, we practiced duck-and-cover in grade school against the threat of nuclear attack, the Vietnam War was raging, and political leaders were assassinated. Our nation survived all that. Somehow, we have to get through this, too.

I want to live in a country that champions empathy over narcissism, that respects the rights of individuals without shredding civility, that prizes heart over hate. I want fair and free elections. I want the voices of calm and reason and hope to prevail over the voices of anger and fear and divisiveness.

I have to believe we are all better than this. As of this writing, a group of Muslim Americans has raised more than $130,000 to help Jewish victims of the Pittsburgh synagogue massacre. This is the true spirit of America. This is the America we need to cherish and support and strengthen.

Election Day is one week from today. Please. Vote. The health and future of our democracy depends on us all.

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 Credit: Zoran Kokanovic

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Filed Under: Body, Hearing, Mind, Sight Tagged With: body-mind balance, managing chronic disease, resilience, stress

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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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