• 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

Off Kilter

Evelyn Herwitz · August 1, 2023 · 4 Comments

I lost a friend last week. Joanna battled a deadly form of cancer, mesothelioma, for more than three years, with incredible courage, strength, pluck, and humor. She survived a high risk research trial this past spring that initially seemed to shrink her tumors, only to have them rage back within weeks. She had just begun another research trial, but the cancer had progressed too far. She died, surrounded by loved ones, Wednesday night. She was only 47.

When I learned the news from her husband’s heart-wrenching post on her Caring Bridge journal Thursday morning, I felt gut-punched. As her rabbi said at her funeral on Sunday, how could someone with such a powerful will to live be gone? It made no sense. It felt so wrong. A friend wrote in the comments to her husband’s message that a light had gone out in the universe. I felt the same.

I met Joanna nine years ago in a Jewish text study class. We were exploring Mussar, teachings and practices about different “soul traits,” such as compassion, patience, gratitude, order. As is the way in Jewish text study, we each had a study partner, and Joanna and I became a pair.

One afternoon in November, the two of us went to the local art museum to dig into the week’s soul trait, balance, which involves moderation, finding the middle path between extremes. Being not only a ballerina, artist, and yogi, Joanna also held a PhD in astronomy. As we wandered through the galleries, seeking ways to understand the meaning of balance, she brought a unique set of ideas to our conversation. Fortunately, I had written everything down in a journal, which I found Sunday after returning home from her funeral.

Rereading those notes, I felt as if she were still there, telling me just what I needed to hear after days of feeling so off kilter—that balance is not a static state. When you balance on one foot, it’s a process of constant readjustments, minuscule shifts in muscle and bone. Maintaining balance requires the offsetting of opposing forces. Physics dictates that both are necessary. Gravity, explained Joanna, causes all planets to be spherical, because gravity pulls mass toward a central point. And, we concluded, centeredness is essential for wholeness.

My notes of our conversation also reminded me that balance does not mean moderate amounts of everything. Achieving balance is different for each individual, a little of this, a lot of that, a combination of all factors in their proper relative proportions. And it’s not, by definition, symmetrical. The best example: a Calder mobile.

Unlike Joanna, who could balance so gracefully en pointe and hold perfect yoga poses, I can barely stand on one foot without falling. But I know exactly what she meant by all the tiny muscular adjustments that my foot and leg try to make to hold still. Balance is most certainly not a steady state. Even Calder mobiles flutter and twirl with the slightest movement of air.

In the weeks and months to come, when I think of Joanna, I’ll be thinking of all that I learned from her as I try to regain my sense of balance. She was a great teacher, at heart. She still is. May her memory be for a blessing.

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: Colton Sturgeon

Share this:

  • Share
  • Email
  • Print
  • Facebook
  • Twitter
  • LinkedIn

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

Art in the Park

Evelyn Herwitz · July 25, 2023 · 2 Comments

What could be more pleasant on a beautiful summer Sunday afternoon than a stroll through our Fair City’s oldest park to view sculptures on display? It’s an annual event that we always look forward to, and this year’s exhibition is one of the best I’ve seen.

To the clatter of teens practicing skateboard tricks, the click of dominoes accompanied by Latin music adrift on a breeze, and exhortations by a man in a tan suit preaching gospel, Al and I wandered through Worcester’s Elm Park admiring artworks. Here are my favorites. Enjoy!

“Deer” by Jose Criollo
Recycled tools, chains, and metal machines

 

“The Feather” by Kirk Seese
Steel, MDO, UV links, acrylic sealer

 

“Whirlwind 1,2,3” by David Skora
Fabricated and polychromed welded steel

 

“SOS Swimmers” by A+J Art + Design
Polyurethane foam, paint, anchoring system

 

“Chirp, Chirp!” by Chandler Magnet Elementary School, 6th Grade
Ann Villareal & Rachel Gately, Teachers; Donna E. Rudek, M.Ed., Artist

 

“Mary’s Machine” by James DiSilvestro
Cast iron sewing machine, shaped steel, paint

 

“Ancestor” by Madeleine Lord
Welded steel scraps

 

“Disk” by Vicente Garcia
Self-rusting steel plate, rebar

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.

Share this:

  • Share
  • Email
  • Print
  • Facebook
  • Twitter
  • LinkedIn

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

Case Management

Evelyn Herwitz · July 18, 2023 · 4 Comments

I rarely cancel doctor’s appointments, even when I don’t feel like going. But I did that on Monday.

I was supposed to see my Boston Medical pulmonologist, the one who specializes in pulmonary hypertension, for a late afternoon appointment. This was a routine follow-up from February.

However, on Friday I had just driven into Boston for a midday appointment with my cardiologist, also a routine follow-up, this time from January. And since he has been my go-to for diagnosing my Type 2 pulmonary hypertension, and, thank goodness, the medication he put me on is working well, I just didn’t see the point of the Monday appointment. Why drive an hour-plus each way to wait and wait for a 15 minute appointment where I will tell the same story of my status and get the same (welcome, but not needed) reassurance from her that I’m doing okay, no changes needed? Especially if she can just read his notes in my chart.

This is not to say that I don’t value the pulmonologist’s time and advice. It’s just the schedule made the whole thing seem redundant. And Boston traffic during rush hour is no picnic.

I tried several times last week and again Monday morning to see if I could at least switch the appointment to telemedicine, but now that the pandemic is in the rear view mirror (thank God), that option is no longer readily available. So I rescheduled for September at a more reasonable time of day.

There are always stretches of multiple medical appointments in my calendar. Sometimes they are well-spaced, and sometimes they clump together, as they have recently. I still have another Boston Medical appointment for Thursday with my rheumatologist. Cutting out one more commute this week is the best way for me to conserve my energy while managing my own case. And to stay sane.

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: Sunguk Kim

Share this:

  • Share
  • Email
  • Print
  • Facebook
  • Twitter
  • LinkedIn

Filed Under: Body, Mind Tagged With: body-mind balance, managing chronic disease, pulmonary hypertension

And She Persisted

Evelyn Herwitz · July 11, 2023 · Leave a Comment

It is really hard to be patient. Especially now, when we’re so accustomed to getting immediate answers at the click of a keystroke. Especially when it comes to ambiguous health issues with no ready solution in sight.

But I have a different context for this observation, as I write on a rainy Monday morning. Please bear with me.

I have been working on a novel since fall 2014. Set in World War I, it’s about a widow whose estranged daughter runs off with her beau to volunteer for the French medical service, and the mother’s journey to find her and bring her home. You can read more about it here. For the past year-and-a-half, I’ve been looking for a literary agent who will help me get published. It’s a very long slog.

I’ve gotten some bites and requests for parts or all of the manuscript, only to have the agent reject it (“I didn’t fall in love”) or in one case, ghost me for the better part of a year after promising to read it. I’ve worked on the language and plot some more, completing the eleventh draft this spring. I feel confident it is my best work. But the book publishing world is highly competitive, and it is very hard for a debut author to get her toe in the door, let alone a whole foot.

It takes a ton of patience. And confidence. And a really thick hide. Earlier today, I spoke with a published author of multiple novels who was kind enough to read the manuscript for me and give me some feedback. It’s taken the better part of a year for us to connect. Worth the wait, because he was very encouraging, told me no need for any more revisions, just focus on getting it published. He had some good suggestions that confirmed my strategy going forward and also gave me a few other helpful tips. Most of all, he likened the process to starting a small business, which resonated for me, having wrestled through that experience years ago to launch my marketing consultancy. “A year-and-a-half is nothing,” he added.

It’s all about managing expectations, which is true of most challenging problems. American culture places a premium on speed, youth, and instant gratification—none of which has much value for solving a really difficult issue. Getting my novel published will take more time and research, many more queries, and a resolve to keep going even in the face of multiple rejections.

Managing an elusive disease with no known cure, like scleroderma, takes a lifetime of learning to manage symptoms, find the right medical team, build partnerships with health care professionals, practice a healthful lifestyle, get help for depression and other mental health challenges that arise in the course of such complexity, and find ways to live fully with the disease. For starters.

It takes a mother-lode of patience. For you, Dear Reader, that is what I wish on this rainy Monday morning.

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: Nathan Dumlao

Share this:

  • Share
  • Email
  • Print
  • Facebook
  • Twitter
  • LinkedIn

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

“A People’s Contest”

Evelyn Herwitz · July 4, 2023 · 2 Comments

On this July 4th, I’m looking forward to relaxing and going to an outdoor concert in the evening, a classic way to mark Independence Day. But I’m also thinking about what our country means to me and what’s at stake in these fraught times. So I turned to Abraham Lincoln for some insights.

I share with you here excerpts from his July 4, 1861 Message to Congress, at the outset of the Civil War. He opens with an explanation of his profoundly difficult decision to invoke war powers in response to the Confederate Army’s April 12 assault on Fort Sumter in Charleston Harbor, South Carolina. While much of Lincoln’s message is specific to the details of the war, his thoughts about our republic remain as fresh and insightful as the day he wrote them. Well worth recalling today in our divided nation:

And this issue [the attack on Fort Sumter] embraces more than the fate of these United States. It presents to the whole family of man the question whether a constitutional republic, or democracy—a government of the people by the same people—can or can not maintain its territorial integrity against its own domestic foes. It presents the question whether discontented individuals, too few in numbers to control administration according to organic law in any case, can always, upon the pretenses made in this case, or on any other pretenses, or arbitrarily without any pretense, break up their government, and thus practically put an end to free government upon the earth. It forces us to ask, Is there in all republics this inherent and fatal weakness? Must a government of necessity be too strong for the liberties of its own people, or too weak to maintain its own existence? . . .

This is essentially a people’s contest. On the side of the Union it is a struggle for maintaining in the world that form and substance of government whose leading object is to elevate the condition of men; to lift artificial weights from all shoulders; to clear the paths of laudable pursuit for all; to afford all an unfettered start and a fair chance in the race of life. . . .

Our popular Government has often been called an experiment. Two points in it our people have already settled—the successful establishing and the successful administering of it. One still remains—its successful maintenance against a formidable internal attempt to overthrow it. It is now for them to demonstrate to the world that those who can fairly carry an election can also suppress a rebellion; that ballots are the rightful and peaceful successors of bullets, and that when ballots have fairly and constitutionally [been] decided there can be no successful appeal back to bullets; that there can be no successful appeal except to ballots themselves at succeeding elections. Such will be a great lesson of peace, teaching men that what they can not take by an election neither can they take it by a war; teaching all the folly of being the beginners of a war. . . .

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: Abraham Lincoln photographic portrait by Joseph E. Baker, c 1865; Library of Congress

Share this:

  • Share
  • Email
  • Print
  • Facebook
  • Twitter
  • LinkedIn

Filed Under: Hearing, Mind, Sight Tagged With: lessons from history, resilience, stress

  • « Go to Previous Page
  • Go to page 1
  • Go to page 2
  • Go to page 3
  • Go to page 4
  • Interim pages omitted …
  • Go to page 118
  • 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

  • First in Line
  • Enter Fall
  • Baltic Souvenir
  • Barbie Land
  • Rhapsody in Teal

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 © 2023 · Daily Dish Pro on Genesis Framework · WordPress · Log in