Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

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

Passing Storm

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It’s pouring rain as I write on Monday afternoon, much needed after a very warm weekend here in Central Massachusetts. I was planning to go out and run some errands, but fortunately I noticed the darkening sky and heard rumbles of thunder as I was getting ready. So here I am, back at my computer, waiting out the storm.

One never knows what is next.

All of us who live with life-altering disease know this feeling all too well. While we may be able to influence outcomes, given healthy choices, good access to quality care, and enough resources, our bodies eventually deteriorate. And we don’t control the timeline. The older I get, the more I appreciate that the present moment is the only reality. Paying attention is essential. So is the ability to pivot.

Now the sky is lifting and the rain, easing. Thunder grows fainter, confirmed by the radar on my phone app that the storm has passed. We have more information and tools at our disposal than at any previous time in history to help us make thoughtful decisions. But ultimately, making the most of our time on this spinning ball of earth and water and sky means simply to stay present.

I’ll be heading out soon. Be well, Dear Reader.

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: Dave Hoefler

Eleventh Plague

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Last week was a roller coaster ride. It’s always a hectic time, preparing for Passover, what with all the cleaning and switching over our kitchen to our special Passover dishes and cooking, cooking, cooking. But this year, for the first time in three, we had planned to host the first seder on Friday night in person. Like so many families readying for the big holiday weekend, be it Passover, Easter, or the evening meals of Ramadan that coincide this year, we were really looking forward to, at last, celebrating together across a real table, rather than on Zoom.

Al had worked late in the kitchen on Tuesday, getting things ready so I could begin cooking the next morning. But when I came downstairs on Wednesday, he seemed weary and not himself. “Are you okay?” I asked. “I’m just tired,” he said. About an hour later, he was retching in the bathroom. My heart sank. I had recently learned that the Omicron BA.2 variant of Covid often presents with GI symptoms.

I sent him to bed, donned mask and gloves, and gave him a rapid test, which turned up negative. But I also knew that the rapid tests aren’t necessarily accurate in the first few days of symptoms with this variant. So I called our clinic and was able to get us in for PCR tests early that afternoon. They said we’d have results by the next day. I emailed our family that we were in a holding pattern for Friday night.

Al spiked a fever that afternoon and evening, but fortunately, he was fever-free by Thursday morning, not yet hungry, but able to eat a bland diet. I spent the rest of the day food shopping, cleaning, and cooking more food that evening. His condition continued to improve, but no PCR results. I emailed family that things were looking better, and we would confirm plans in the morning. I went to bed dog-tired.

Friday morning, still no PCR results, but Al was back to normal. We decided to green-light the seder, understanding that anyone who felt uneasy about coming should do what was best for them. All had to take rapid tests and have a negative result to attend. Our cousin’s husband, a physician, decided to stay home because he had been fighting a cold, which he told me with “97% certainty” was not Covid, but he went ahead and got a PCR test anyway, at his wife’s insistence. Finally, late morning, our PCR tests came back negative, a huge relief. Our daughters arrived late afternoon, and our other relatives that evening. I finished all my cooking just before everyone came. We had a wonderful seder together, and all felt so good to finally be able to share the meal and all the rituals in person.

Saturday morning, our physician cousin, whose family was hosting the second night, sent us all an email. He had tested positive. Now what? To my surprise, I did not freak out. There was nothing to be done. And I wasn’t going to spend the weekend fretting about the possibility of developing Covid symptoms. We ended up with just the four of us for the second seder. Our eldest returned to Boston that evening, and our younger daughter left for Philly the next morning. None of us have developed any symptoms, nor have our cousins who were exposed at home, who came here. Given that, if you’re infected, you can shed the virus 24-48 hours before becoming symptomatic (and most people do have symptoms), but all appeared to have spent the weekend symptom-free, we are most likely in the clear of a second-hand Covid infection.

A good thing, because Monday was my 68th birthday, and I really didn’t want the gift of Covid! I spent the day writing, which was wonderful.

So goes life in Covid times, which are not really over. Not yet. I hope you and yours enjoyed a lovely weekend, whatever holidays you may or may not celebrate. Stay safe out there.

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.