Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Why Me?

· · 1 Comment

For all of the bad things that happened during the COVID pandemic, the one good thing that happened for me was reconnecting with old friends over Zoom. Five years ago, when we were hunkered down, I looked up friends from my teens and twenties and caught up online.

Some of us have continued those conversations, maybe once or twice a year. And this past Sunday, a bunch of old friends from my high school days shared our lives for a couple of hours. It was funny and poignant and an important touchstone for all of us, to recall where we came from and where we’ve ended up.

One of my friends, whom I haven’t seen in fifty years, shared that her sister had also had scleroderma. She died several years ago from a brain tumor, but lived with significant skin tightening for about 15 years. A number of years ago, I had also learned that the older sister of another classmate had died from very aggressive scleroderma. What are the odds that three women from the same small high school all got this rarest of diseases?

My friend on the call Sunday has wondered if the fact that our school was not far from a nuclear power plant might account for her sister’s illness and other rare autoimmune diseases that run in her family. I have wondered if the two years I spent in graduate school in Pittsburgh, living in a neighborhood on a hillside above the Jones & Laughlin Steel mill, which flushed its stacks every weekend, filling the air with the thick odor of rotten eggs, may have played a role in my disease trajectory.

Researchers still don’t know exactly what causes scleroderma, this formidable autoimmune disease that tricks the body into producing too much collagen that tightens and hardens skin and connective tissue. My rheumatologist at Boston Medical has told me the latest theories point to some kind of virus that triggers the disease process in people with certain genetic predispositions. It is not contagious, and very rare for direct family members to share the disease.

Stress also plays a role in disease onset. Research supports this, although other factors—genetic, hormonal, environmental, and immune system health—are all part of the mix. In my own case, I developed symptoms (puffy fingers, migrating arthralgia, gut issues, fatigue) in my late twenties after my first marriage ended in divorce. I was anxious and running on adrenaline while coming to terms with it all (not to mention the stress of the marriage itself, which was considerable). All that adrenaline flooded my body with cortisol—which at too high levels can damage the body’s immune system.

So, whatever else I was exposed to and whatever my particular genetic mix, that probably set the stage for my getting scleroderma.

If there’s one thing I’ve learned from all of this, it’s to take stress seriously and to do my best not to let it overwhelm me (not always successfully in our tumultuous times). Meditation helps. So does exercise (Pilates, walks, stretching). So does surrounding myself with nature and art and music. Loving family and friends are essential supports.

Recently I was listening to a meditation app that mentioned a Korean custom to eat only until you’re 80 percent full. The idea is to not overdo, to leave room to appreciate what you’ve enjoyed. It provides a good metaphor for living, as well—to engage fully, but not to the point that you deplete your energy (or run your health into the ground). Keep that 20 percent reserve for resting, recuperating, and recharging.

I’ve been thinking about this a lot, lately. I hope it’s a useful concept for you, as well, Dear Reader, especially right now. Take care.

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: engin akyurt

Open Air Cathedral

· · Leave a Comment

Beautiful, crisp fall weather this weekend beckoned for a walk. Our trees here in Central Massachusetts have carpeted lawns and streets with leaves, but there is still much beautiful foliage to enjoy. So I set out on Saturday afternoon to stroll through a historic cemetery in our fair city.

Why a cemetery, you ask? Because this one, Rural Cemetery, was first created in the 1830’s during the eponymous 19th century movement to create “open air cathedrals” for burying the dead, as opposed to cramped burial sites that dominated urban centers. Aside from the aesthetics, these park-like cemeteries limited the risk of ground-water contamination from decaying bodies. And so, our Rural Cemetery is an arboretum with some very old and magnificent trees.

The cemetery is also the resting place from some famous local citizens, whose names define many streets and landmarks here. Being a local history nerd, I find it fascinating to discover them, as well as to observe the art of gravestones from earlier times and how it reflects social attitudes and values about that most mysterious aspect of life—what comes next.

I hope you enjoy this stroll with me. . . .

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.

Tornado Warning

· · 2 Comments

On Saturday afternoon around 4:15, I was lying on our living room couch and reading (not light reading, literally and figuratively, an 850+ page history of the Thirty Years War, but that’s another story), when my cell phone alarm went off. Really loud: a National Weather Service warning of potential for a tornado in our vicinity for the next half-hour. TAKE SHELTER! it advised, with more details in all caps.

Now, it was already dark and pouring outside, and we’d experienced a bright flash and loud crack of thunder a few minutes earlier. A severe storms was definitely passing through. But tornado watches are rare in New England, let alone a tornado warning. (Years ago when I lived in Illinois, I never got used to all the watches and warnings, and tornadoes were my dream metaphors for anxiety, but all that ended when I moved back east.) Being the more cautious of the two of us, I checked with Al, who was immersed in another activity, to be sure he’d heard the alert. He shrugged and went back to what he was doing.

I went downstairs with my heavy book to read. Since our daughters moved away, our basement family room is really now a junk room for storage, but there’s still a couch and decent lighting. It’s musty and needs a good clean-up, one of my perpetual to-do’s that I mean to get to this winter (there, I’ve put it in writing). Part of Al’s old vibraphone was lying on the couch, so I rolled up the wooden tone bars, moved them to the side, then picked up the strip of metal resonator tubes, to do the same, lost my balance and fell. Fortunately, I fell on a rug (mostly), but I banged my knee on part of the vibraphone. Which was not fun.

There’s a small, high window in the room, and it was quite dark outside. I could hear the rain, but no thunder or lightening cracks. So I read and checked the time and read and finally went upstairs at 4:45. Al was still immersed. I got an ice pack out of the freezer for my knee and went back to my history book on the couch. I felt kind of silly, but so be it.

Until I learned, not long after, that a tornado had actually briefly touched down in a suburb not far from us at exactly 4:15. Known as a “spin-up” or “land spout” by meteorologists, it was relatively small and lasted only a few minutes. But the damage was significant. In that brief visit, it uprooted and destroyed numerous large trees, including some oaks, which are among the sturdiest trees in this part of the country.

Which just goes to show that you never know what’s just around the corner, and that it’s worth being cautious when the NWS sends you an all caps warning about approaching storms. Especially in this time of severe weather, I’d rather sit in our musty family room for a half-hour than risk a tree falling on our house. If I get my act together, the next time this happens, our old family room will be a much more pleasant space to wait it out.

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: Greg Johnson

A Great Way to Start the Day

· · 2 Comments

Labor Day is past, the school year has begun, and red-orange sugar maple leaves are drifting to the ground. Here in our Fair City, it is preliminary Election Day, when we have the option to narrow the field of candidates running for at-large seats on our City Council. Fourteen citizens have thrown their hats into the ring for six seats.

I doubt if many people will take advantage of the opportunity to vote. This isn’t a flashy election, with the high stakes of the upcoming Mid-Terms next year. But it’s important. Our city is in the midst of a development boom, with affordable housing options evaporating for renters. Roads need repair and repaving. Our public schools need attention. Climate change is affecting every aspect of our lives. State funding is tight, and federal funding, even tighter now. Several times over the past year, City Council meetings have been disrupted by raucous protests over international headlines. Whom we choose to guide our city through these tumultuous times matters.

So, yesterday, on Labor Day, when I took the day off to start a new sewing project, I first drove down to City Hall and deposited my mail-in ballot to the drop-box outside the back entrance. I would have mailed it, but I missed the deadline and wanted to be sure it was received by close of business today.

It took me a while to complete the ballot. I didn’t know a lot about some of the new candidates, so I read through a series of profiles on our local newspaper’s website. Honestly, it was impressive. I find it very moving, when so much seems so dark these days, that idealistic citizens still want to serve our city. The role of City Councilor is not easy. The issues are complex, people are demanding and often not forgiving of human foibles, and the hours are long, for a nominal salary. Everyone on the Council has a full-time job elsewhere.

Perhaps it would have been just as simple to vote in-person at our local polling place today. But I like the convenience of the mail-in ballot, to be able to vote on my own schedule. There is nothing complex or mysterious or fraudulent, as some claim, about the process. We use paper ballots, whether in person or mail-in. The only difference is how the ballot is collected.

Throughout election season here, yards are dotted with candidate signs. Already I’ve seen candidates standing at major traffic intersections, holding up posters and waving to passing cars. Our mailbox has been stuffed with oversized postcards, touting candidate qualifications. We’ve answered the doorbell several times to people canvassing for their person. It’s a local tradition, this old-fashioned, down-to-earth effort to gain name-recognition in the build-up to November 4.

On my way downtown, traffic was light. Street meters on Labor Day were free. The whole round trip, including parking and walking to the drop-box and back to my car, took no more than 20 minutes. And it gave me a boost—an excellent way to start the day.

Whenever I vote, whether in a local run-off or a national election, I always feel better afterwards. In our democracy, voting is both a right and a privilege that I never want to squander. Every vote counts, especially at the local level. If you have the option to participate in your own community today, please do.

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.

What Next?

· · 2 Comments

Somewhere I read recently a recommendation that resonated, a way to manage stress. The concept was to “shorten your horizon.” The idea is not to stop setting goals or making plans or other future-oriented tasks. Rather, it’s about adjusting how far to look down the road in anticipation of events.

Given all the scary news of late, this seems like a sound approach to coping. Given, also, that I have a fiction writer’s imagination—both a blessing and a curse—I find this appealing. If I focus only a week ahead, rather than a month or six months, or a year, or, good grief, even beyond that, I have a much clearer grasp on what is more likely to happen, how I might be affected, what I can and cannot influence, and how to adjust expectations and plans accordingly.

Of course, reality has a way of throwing all of that into the hopper. The only truth we ever know is what is happening in this moment. And living fully in the present is truly the only way to find fulfillment in each day.

Which is why shortening your horizon can help you stay more in the present. If your mind is not always preoccupied with the future, especially the far future, you aren’t as distracted from appreciating what’s in front of you—particularly relevant with so much trouble in the world.

This is also an essential skill set for coping with a chronic disease like scleroderma. You need to learn what to watch for, seek out excellent medical advice, follow your treatment plan, but also appreciate what each day brings. Years ago, when I was first diagnosed, I decided I didn’t want to know the odds of survival, which turned out to be one of my best instincts. At the time, the expectation was about seven years, a terrifying prospect. I intuitively learned to focus on a shorter horizon back then, because to do otherwise would have been paralyzing.

So, here I am again, relearning that same lesson, as it applies to life in a tumultuous world. It’s second nature for how I manage my scleroderma. Now I just have to figure out how to master that outlook for events even farther beyond my control.

It’s a work in progress.

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: Nicole Avagliano