Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Airborne Again

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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.

Play Ball

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Today in the Northern Hemisphere, the sun appears at its highest point in the sky and daylight peaks. I always find it ironic that summer opens with a climax of daylight, which begins to ebb the very next day. But perhaps it is the best of balancing acts: as the days grow hotter through summer months, our exposure to the burning sun gradually eases.

Summer always feels full of promise. This weekend, we welcomed its nascent approach with that most summery of summertime activities, a baseball game. Our Fair City is home to the Red Sox minor league team, and we lucked out with a Father’s Day home game in our beautiful year-old stadium, on a comfortable afternoon of intermittent sunshine. Our eldest daughter joined us for a relaxing time with a great view above home plate. And we even won, 5-4!

Some people find baseball too slow. For me, especially in our hurry-up-do-it-now-before-you-miss-out society, the pace is perfect. There’s plenty of time to chat and just sit back, watch the game and all the playful side contests between innings (catch the ball and win a pie!), enjoy a ballpark snack, stretch and sing Take Me Out to the Ballgame at the seventh inning and Sweet Caroline (the Red Sox Nation anthem). I was having so much fun just hanging out with my family that I missed a few key plays, but no matter. The ninth inning packed in some real excitement, and we all had a great time.

For those few hours, I felt transported—away from all the stresses and worries of our present moment. It felt like a real mini summer vacation. I came home refreshed.

Recently I was listening to a discussion about language, how American English is full of violent metaphors to express resilience and success. A good performance is described as “killing it” or “blowing them away.” To be precise is to “nail” a presentation. We’re advised to “power through” pain or adversity, just “hang in there.” To ask someone their opinion, we say “shoot.” And that’s just a small sampling.

While baseball certainly has its own slugger language, the sport has also brought us some kinder, gentler expressions: “play ball” when it’s time to begin; “step up to the plate” to meet a challenge; bring your all when it’s “the bottom of the ninth.”

How would our world change if we framed our thoughts in baseball idioms? How would life be different if we took time to savor what’s right in front of us, enjoy the slow moments and pauses, sing and laugh more? It’s summer here in the Northern Hemisphere. No better time to find out than right now.

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.

Musical Interlude

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As I write, Al is playing the piano. After a few bars, I recognize the tune, “Sixteen Tons,” which was written, I discover with a quick Internet search, by Merle Travis about life in Kentucky coal mines and first released by Capital Records in 1947.

You load sixteen tons and what do you get?
Another day older and deeper in debt.
Saint Peter don’t you call me, ’cause I can’t go.
I owe my soul to the company store.

The song was made famous, though, by Tennessee Ernie Ford in 1955, the year I turned one. Five years later, for my first grade play created by our teacher, Miss Kelly, we mimed and acted out a set of popular tunes. The Tennessee Ernie Ford version of “Sixteen Tons” was one of them, and we pretended to be shoveling coal over our shoulders.

Another song was “Whistle a Happy Tune,” from the Rogers and Hammerstein musical The King and I, which was popularized in a film in 1956 starring Yul Brynner and Deborah Kerr. For that one, we had partners, and one sat on the floor facing the other, who pretended to whistle. We were first graders, after all. My partner wore glasses and sported suspenders and a bow tie. Everyone thought we were adorable.

Whenever I feel afraid, I hold my head erect,
and whistle a happy tune, so no one will suspect
I’m afraid.

It’s one of the strange things about memory, how songs can truly bring you back. That, and the fact that I can still recall those lyrics as well as the nervous excitement of being on stage in front of all the other students and our parents. I can still see the beige backdrop curtain and the little boy who was my partner, pretending to whistle as he rocked side to side in time to the song.

And it’s odd, too, how those two songs, the only ones I recall from the play, resonate with our current moment. The world feels heavy, the news drags us down, and for so many it’s truly a struggle to pay down debt and stay afloat. And we need to find ways to stay brave, dig deep for courage to face the challenges, when every day seems to bring another “unprecedented” outrage.

Make believe you’re brave, and the truth will take you far.
You may be as brave as you make believe you are.

To that end, I share this blog post by Angel Chernoff, “5 Painfully Obvious Truths We Tend to Forget in Hard Times.” It gave me some needed perspective last week. I hope it does for you, too.

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 It Will Take

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Last Tuesday evening, a few hours after news broke of the horrific Uvalde massacre, I attended an active shooter training session at our synagogue. Conducted by members of our local police department, the training had been planned for months, ever since the synagogue hostage crisis in Colleyville, Texas, back in January.

We learned about ALICE, an acronym for five steps to remember if a shooter enters the building:

  1. Alert others as soon as you are aware of a threat.
  2. Lockdown if evacuation is not a safe option.
  3. Inform authorities and others with real time information about what’s happening.
  4. Counter the shooter any way possible, via distraction or direct attack.
  5. Evacuate as soon as possible, as safely and quickly as possible.

We learned that a person can bleed out in three minutes. We learned to look for where the bullet exits the body rather than where it enters, because more damage is done as it passes through. We learned how to apply a makeshift tourniquet and pack a wound while waiting for emergency services to arrive. We also toured our building and learned about panic buttons and safe rooms.

It was hard and surreal, and I had to force myself to stay. I was grateful that our synagogue already has invested a lot of time and thought and resources into safeguarding the building. I left with a heavy heart.

At some point, we will gather again to do an active shooter drill. For some of my fellow congregants, none of this is new, because they work in schools or private companies or medical facilities that have undergone similar training. Children endure these drills routinely at their schools. The children and teachers at Robb Elementary had a lot of training, and at least a few in the targeted classrooms were able to hide and evade the madman and live. But there are no guarantees that any of this will work if, God forbid, a shooter ever came to our synagogue.

This is life in America in 2022.

Once again, I find myself wondering what I can do to stop these destructive forces in our society. Over the weekend, I realized I was framing the question the wrong way. The issues are so huge, they are paralyzing. Yet, to give up, because it’s “impossible” or “out of my control” is not the answer; neither is freezing in place out of a sense of helplessness or powerlessness. To do so only yields control of outcomes and becomes a self-fulfilling prophesy.

Rather, I realized, I can focus on one small action, every day, to push back and help our nation shift course. When tackling any huge problem, I’ve found that taking small steps lead to bigger steps, and each step leads to greater clarity about the next. On Sunday I donated to the Texas Tribune, a non-profit group of journalists who have done outstanding truth-telling about the tragedy in Uvalde and its aftermath. On Monday, I wrote this blog post. I will join a gun safety protest rally, again. And so on. I no longer feel like I’m sitting on my hands. And if my efforts are coordinated with others, the pressure multiplies.

So I hope this gives you some ideas, Dear Reader. And I hope and pray that none of us ever needs to put active shooter training to the test.

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: Biel Morro

Venturing Out

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It’s been years since Al and I went to a wedding in the Before Times. This spring-summer-fall, we have four. The first was this past Sunday evening, the celebration of a young couple’s wedding that actually took place two years ago. After several postponements due to Covid, they had a reaffirmation of vows and a big bash at a country club, about an hour’s drive from our home.

The weather was hot, in the 90s, as thunderheads slowly filled the horizon. Despite one threatening rumble, however, the storm passed us by, the couple had a lovely outdoor ceremony and a romantic photo shoot, and we all moved on to the party indoors in a cavernous event space.

Now, Al and I had our K95 masks for the indoor bash, but the vast majority of guests went without. A few other older adults wore masks, so we didn’t feel completely alone, and even a couple of younger guests did, too. No one made any snide comments, thank goodness. Still, it was a bit awkward to be among the very few covering our noses and mouths, even as I was aware that the crowd included medical professionals and others who believed in vaccines.

At the same time, there was no way I was going to chance it maskless. We’re still in a pandemic, even if almost everyone wants to forget about it. I cannot take any undue risks, given my scleroderma, and neither can Al. Fortunately, we were seated at the back row of tables, and the only other couple at our table wore masks, as well. The rest of the place settings remained empty because, we later learned, those people had cancelled last minute due to medical risks and worries about the Omicron surge. The other couple never removed their masks, avoided the meal, and stayed only part-way through the party.

So we ended up with the best possible setting, by ourselves at a large round table, well distanced from others, while we ate. We danced a little, wearing masks, staying at the edge of the dance floor. And we left after dessert. We both enjoyed ourselves and were very glad that we could celebrate with the happy couple, family, and friends.

I’m hoping that we made the right decisions and have avoided exposure to the virus. So far, a day later, I feel fine, and so does Al. I don’t know when we’ll ever get back to “normal,” whatever that means now. I’m not ready to eat indoors at a restaurant, where we have no idea if others are even vaccinated and the space is more confined (with one exception back in April that worked out okay). I’m starting to plan some travel this summer that requires flights. I’m investigating travel insurance that covers sickness from Covid.

While the introvert in me has managed quite well, thank you, with limiting in-person socializing since March 2020, I now need to get out and about again—beyond just trips to the doctor, small family gatherings, short errands, or our synagogue, where I help to set our Covid policies and we have strict vaccination and masking rules in place that have proven prudent. We’ve enjoyed some lovely, albeit limited, long weekend getaways, and my two writing retreats over the past two years have been godsends. But my world now just feels too small.

So, it’s time to venture forth. It’s time to not be cowed by what-ifs, while taking appropriate safety measures, regardless of what others are doing. Much as I hate wearing my mask, I will continue to do so when in crowds or other Covid-risky situations, both inside and out, as I go.

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: Marc A. Sporys