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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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Fleeting Moment

Evelyn Herwitz · August 9, 2022 · 4 Comments

For Mother’s Day this year, my daughters gave me a hummingbird feeder. I’ve never had one before, and it takes some tending, but in the weeks since, I have faithfully made a sugar water solution (1:4 ratio) and hung the feeder on the corner of our deck, changing the nectar every few days so won’t spoil, and waited.

And for many weeks, no hummingbirds came to visit. I checked migration maps. Plenty of sightings in our region. But none here at home.

That is, until a week ago Sunday. We were sitting out on the deck with family, when all of a sudden, my cousin startled. A hummingbird had just hovered by the feeder. I had my back turned, though everyone else saw and marveled. Soon, it returned, along with a second hummingbird. This time I turned in time. Tiny, jewel-toned, they hung in the air, wings a blur, then zipped away toward a high branch of a Norway maple. Miraculous.

I made certain to change the nectar that night, so it would be fresh for the next day. Sure enough, Monday morning, the gold breasted hummingbird returned for a sip. I saw it a couple of times. But neither of these tiny fliers have returned, since.

I’m not sure if it has to do with the extreme heat of recent days. I’ve changed their nectar frequently, because it can easily spoil in 90+ degree weather. Still, no hummingbirds.

I hope they return. Hummingbirds are territorial, especially the males, and they remember location of feeders. Such beautiful creatures. Even if only for a moment, so worth the wait. A stunning reminder that each moment is precious.

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: Ramona Edwards

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Filed Under: Body, Mind, Sight Tagged With: mindfulness, resilience

If a Tree Falls

Evelyn Herwitz · August 2, 2022 · Leave a Comment

The day after the 2016 election, a crew from our city’s forestry department came to our house. We had requested that they prune dead branches on our Norway maple. But, to my dismay, they were actually planning to take the tree down. I ran outside and talked them out of it, and instead, they did the necessary pruning. I was far too upset about the election to lose a tree, too.

The Norway maple continued to bear new leaves each spring. A few limbs died off, but because it’s a city tree, our arborist is not supposed to prune it. Nonetheless, it seemed to be doing okay.

That is, until this past Saturday. Around 3 o’clock, I was relaxing and reading in our living room when I heard a strange crash. A large limb of the Norway maple had just fallen across the street. No warning. Thank God, no one was walking or driving by at that moment.

What do you do when a tree falls across the street on the weekend? I called 911, and the police said they’d contact the public works department. Our neighbors gathered round and exchanged surprise over our tree’s sudden demise. Cars turned back as they came upon the limb, which had made the street impassible. About an hour later, a guy from DPW arrived and put traffic cones on either side. He said it would be a while before a crew could come and deal with it. Another tree had also fallen elsewhere in the city, and the forestry department is short-staffed.

I went back inside to read. A few hours later, several of our neighbors kindly took it upon themselves to move the limb to the side of the street, so cars could drive by, and I thanked them. When the DPW finally came back, they said they would return on Monday. The entire tree would have to go, because it was clearly unsafe.

And so, yesterday morning, a crew arrived. They put the fallen limb and broken branches in a chipper and then proceeded to take down the tree. I counted its rings later—at least 35 years, and probably older. Decades to grow, an hour to fell. The house looks bare in front.

I plan to request a new tree be planted in its place, once the stump is ground down. I know it was necessary, this time, to remove it. At least I was able to give it nearly six more years to live, and no one was injured when its time came.

Years ago, I wrote a book about the history of our city’s urban forest and how it was suffering from neglect. That book struck a chord and helped to inspire a massive replanting program after a major infestation of Asian Longhorn Beetles about 15 years ago. Over the past year, I have worked with a small group of concerned citizens to create a long overdue Urban Forestry Tree Commission, to deal with issues like funding the forestry department, developing an effective citywide pruning program, and doing a better job of planting and stewarding our public trees. A week ago, our City Council finally approved members of the Commission, and it will begin meeting this fall. I was also appointed by the City Manager this past winter to serve on an advisory committee to help implement a comprehensive plan for our city to meet the challenges of climate change. So, it’s all the harder for me to lose a tree. But health and safety take precedence.

It’s trite but true: Life brings many surprises. All we can do is our best to meet the moment.

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 Tagged With: mindfulness, resilience, stress

Dated

Evelyn Herwitz · July 26, 2022 · 4 Comments

Several weeks ago, after a heavy rain, I discovered that water had seeped into our basement and damaged a couple of cardboard boxes that had been lying around for far too long. So on Sunday, Al and I finally got around to sorting through the contents, to see what, if anything, was worth salvaging.

Now, of the two of us, I tend to be the one who wants to get rid of stuff that we no longer need. But one of the boxes contained items I was loathe to part with: all my old calendars and planners. Fortunately, my husband humored me, especially since I was able to find a place to store them, in chronological order—half a drawer in an old filing cabinet in the basement.

Why bother? you may well ask. The thing is, those calendars are a record of my life. Even as I have kept journals on and off over the years, I have always kept calendars. And this batch dates back to my freshman year in college. There are notes about deadlines for college papers, the weekend I almost broke up with my high school boyfriend (that happened a month later), searching for my first apartment in grad school, interviews I did while working as a journalist, preparing for my wedding to Al. There are also cryptic entries about the time, right after Thanksgiving the first year we were married, that Al had to have emergency surgery because his spleen ruptured from mono. These are landmarks of a lifetime.

At some point, I know I’ll need to part with them. When we finally downsize someday, there will not be room for all the memorabilia. As it is, I have my old college footlocker filled with journals dating back to sixth grade. And more journals on shelves in my office. Plus all my bullet journals of the past several years. Every so often, I’ll have a reason to dig back into them, to find when I did what.

All the more so, as my memory is not as sharp as it once was. My rheumatologists tell me that scleroderma can cause brain fog (beyond the aging process) and I definitely feel it settling in, a very unwelcome guest.

Do all the details really matter? I don’t know. Writing things down has always been my way to preserve the present and plan for the future. Now, all those notes, accumulated over decades, are my keys to recalling my past. And I’m just not ready to throw them away.

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 Tagged With: body-mind balance, managing chronic disease, memory, resilience

Quietude

Evelyn Herwitz · July 5, 2022 · Leave a Comment

I skipped the fireworks this July 4th weekend. I just wasn’t up for it. Last week was such a heavy lift in so many ways, with so much at stake in our democracy. Al and I had no special plans for the holiday, which was fine. I had a long to-do list and needed time to think.

When I finally got up from my desk yesterday for a late afternoon walk around the neighborhood, I was expecting to hear boisterous backyard parties, music, even the pop of firecrackers. But to my surprise, it was quite still. No one else was out walking, unusual for the time of day. Some neighbors had decorated their homes with American flags. One had strung red-white-and-blue bunting from the windows. There were a few homes with a line of cars parked out front, and I smelled some barbecue. But no laughter drifted on the light breeze.

On a picture-perfect Independence Day, the loudest sounds were the chatter of house sparrows and the pensive coos of mourning doves. A few bunnies hopped across lawns. A couple of neighbors, pausing from tasks, said hello. My hydrangea burst silently into full bloom. And that was it.

I am one who enjoys moments like these. As I walked, I was grateful for the peace, the quiet, the contemplative mood. In other neighborhoods across our country, that is not a given. Nor is it a given in other countries around the world.

I hope that you and yours are able to find quietude when and where you seek it. We all need time, right now, just to be.

I’ll be taking a couple of weeks off to do just that, back later in July. Peace.

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 Tagged With: mindfulness, resilience, stress, vacation

Airborne Again

Evelyn Herwitz · June 28, 2022 · 2 Comments

After 27 months of mostly staying put, I finally got on an airplane once again. And, just as I did in March 2020, right before Covid shut down the world, I flew to Philadelphia to see our younger daughter. We had been planning this visit for months, hoping that neither of us would contract the virus last minute and have to scuttle the trip. Thank goodness, we both tested negative on Thursday night, the evening before my Friday morning flight.

And so, I found myself back in the stressful world of air travel, with its crowds and TSA checks and worries about whether my flight would actually be on time or late or, at worst, cancelled due to lack of available aircraft or staff. Thank goodness, the weather held, the flight was on time, and I survived feeling squished in a cramped, worn-out seat. And yes, I wore a mask from the moment the shared van picked me up at home until I stepped out into the warm June morning and found my daughter, waiting for me in her car.

And we had a great visit. Photos below include some of the highlights: a walk through the Magic Garden of mosaics in South Philly, my first in-person view of the Liberty Bell, an abortion rights rally outside the National Constitution Center—one day after the Roe decision came down from SCOTUS—with Pennsylvania Attorney General Josh Shapiro (Democratic candidate in the crucial gubernatorial race this fall) and 1,500 citizens, a stroll down historic Elfreth’s Alley, and a brief but wonderful tour of Independence Hall and “the room where it happened”—debates over the Declaration of Independence, the Articles of Confederation, and what was to become the U.S. Constitution. Oh, and a lot of great meals.

Flying back on Sunday morning was a bit less smooth: my flight was delayed about 25 minutes because the co-pilot had to arrive from a separate flight, due to last minute staffing issues. Given all the SNAFUs that could have evolved from that one logistical issue, including a delayed arrival of the co-pilot leading to time-out issues for the rest of the crew (yes, this once happened to me), it was a relatively minor inconvenience. Overall, the trip was a home run.

How appropriate to visit Philadelphia at this critical inflection point in our nation’s history, how meaningful to be able to share it all with my younger daughter—and how great to feel like I can travel afar, relatively safely, once again.

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 Tagged With: body-mind balance, COVID-19, managing chronic disease, mindfulness, resilience, travel, vacation

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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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