Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Stress Test

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When I was in elementary school in the ’60s, we used to have air raid drills. We would file out into the hallway, kneel down, put one arm under our foreheads and the other covering the backs of our necks. And wait for the all clear. Pretty ludicrous, as were the supposedly reassuring cartoon films we were shown about how to stay safe in a nuclear attack.

One day, when I was in fifth grade, our entire school marched down to the local air raid shelter for a tour. We held hands with the first graders, and the six graders escorted the kindergarteners. We all thought it was pretty neat—staying there would be like a camping trip! Our teacher, however, was so concerned for our well-being that he just let us just play and have fun the next day. We got pretty rowdy by afternoon, and he ended up yelling at us.

We all express stress differently.

That we could be seriously discussing the risks of a nuclear war, today, is beyond belief. In Ukraine, enemies battle over control of a nuclear reactor and bombs drop out of the sky onto schools. As I watch the news, I am at a loss for what to do, other than make contributions to legitimate NGOs that are assisting innocent victims of this unwarranted tragedy.

I feel extraordinarily fortunate to live in a place where my most difficult decision in all this is how much news to consume. I am trying to find the balance between staying informed and drowning in the deluge of tragic reporting. I don’t want to look away, but I also need to take care of my own health and well-being, or I’m of no use to anyone.

So, I am trying to be grateful—for family and friends, a warm bed, a home to call our own, a peaceful neighborhood, money in the bank, freedom of speech, the right to vote, so much more. If there is any lesson to be learned from these terrible times, it is never to take anything for granted.

I’m also trying to follow this wise advice from Oliver Burkeman’s “The Imperfectionist” monthly email. You can find his entire essay here:

“It’s been common in recent days to see people complaining that it’s hard to get any work done, or to get on with ordinary life in general. But this may be the moment for a judicious measure of tough love. Perhaps you just need to get on with things anyway! If you wait, instead, for all the existential threats to pass, all the desperate human suffering to subside, you’ll be waiting forever.

“So don’t wait. Not just because marinating in the news helps no-one, but because what you’ll be doing instead—meaningful work, keeping your community functioning, being a good-enough parent or a decent friend—that stuff actively does help. There’s something you’re here to do. And I highly doubt that it’s doomscrolling.”

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: Screenshot from “Duck and Cover” film, 1952, via Wikimedia Commons.

Awaiting Sunrise

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On a cold winter’s day, I’m thinking of sunflowers. Beautiful, hardy, bright sunflowers have been linked to scleroderma awareness, first in Australia, and now worldwide, symbolizing the sun’s warmth that brings so many of us comfort. At each sunflower’s center are thousands of tiny disc flowers that mature into seeds— symbolizing seeds of knowledge and the quest for a cure.

Sunflowers are also the national flower of Ukraine. Every summer, golden fields of sunflowers blossom across the country, which is the world’s largest producer and exporter of sunflower seeds and sunflower oil. The distinctive bloom is woven into wreathes for celebrations, painted on walls and furniture and folk art.

Before they fully mature and open, sunflower heads follow the path of the sun across the sky and come to rest overnight facing east, awaiting the next sunrise. Various religions have associated the sunflower with spiritual knowledge and a quest for truth and enlightenment. It is an inherently optimistic flower.

So I hold onto that as I have struggled to concentrate this past week, watching the brutal Russian invasion of a sovereign nation unfold. Great bravery and courage inspire. I pray that innocents will be spared, and that Ukraine, with the support of the world, will ultimately prevail.

And to plant more seeds for scleroderma awareness and research, I offer this: The biennial Systemic Sclerosis World Congress, a virtual gathering due to the pandemic, opens next week, on March 10, bringing together experts from around the world to share their work. There is a free Patient Congress, as well, from March 11-12, with presentations by international specialists on many aspects of living with this complex disease. Registration closes on March 7. You can find more here.

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: David Travis

February Thaw

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I was finally able to take a walk Monday afternoon around my neighborhood. The sun was bright, the sky a robin’s-egg blue, temps in the mid ’50s, and my thumb had healed enough so that I could swing both arms without the pain of gravity’s pull on a swollen finger.

All good.

The snow from a recent storm and subsequent snow showers had mostly melted, sending water trickling through storm drains. A mourning dove cooed plaintively from a nearby rooftop. As I walked, the too-tight muscles in my back began to relax. Annoying chatter in my mind quieted, and I focused on what I saw, heard, smelled . . .

Hints of green amidst bleached grass.

A watchful dog’s bark.

A power drill’s whine.

A passerby’s hello.

Tiny buds on tree branch tips.

Hockey sticks slap slap slapping.

Overhead a private plane’s purr.

Wood smoke’s tang.

Sparrows’ chatter.

Sneakers’ scrunch.

Spring can’t come too soon.

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.

Virtual Advantage

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As we brace ourselves against the Omicron variant that’s surging across the U.S. and around the globe, all-too-familiar restrictions are going back in place. It’s scary and frustrating and annoying, yes. But if infection rates in other countries hold true here, there’s at least some reason to hope that this latest wave will be short-lived and not as dangerous. Especially if you’re fully vaccinated, which includes a booster.

In the meantime, I’m taking some inspiration from a virtual meeting I attended last week, and I hope you will, too. What’s interesting to me is that the meeting would probably have been less inspiring if it had been held in person, but Covid restrictions required the online format.

Here’s the background: Over the summer, I got involved in some local civic action, coordinating a group of concerned community members to push our fair city to create a commission that would protect our urban forest. Too many street trees have been targeted for removal to accommodate development and infrastructure improvements, when other solutions are available to achieve those goals while saving mature trees. This is an issue I’ve cared about for decades, but had not engaged with for some time. Our urgent climate crisis impelled me to get involved again.

We succeeded in our effort and also helped to re-elect a city counselor who was a key player in the mix. As a result of all this, I decided to apply for a volunteer seat on a related advisory committee that will oversee the city’s recently adopted plan to mitigate climate change. I passed the first hurdle when my letter and resume were approved for further consideration.

The next step was an interview with a citizen’s advisory board that clears applicants for all city commissions and committees. In the Before Times, this would have been conducted in-person, in some kind of public hearing space where each of about 20 applicants for various volunteer roles would have been interviewed one at a time, semi-privately. But due to Covid, we were all online, in our little Brady-Bunch-boxes, along with the board members, interviewing in front of everyone.

I was #15 on the agenda and a bit nervous.

As the meeting proceeded, however, it soon became apparent that I was in the company of some really remarkable souls. Each one of us wanted to help the city do better. Each wanted to contribute their expertise and passion to a particular volunteer responsibility.

Three of the candidates had immigrated here years ago—one from Ghana, one from Vietnam, and one from Libya—and all wanted to give back to the city (zoning board, elder affairs commission, board of health) that had taken them in and enabled them to flourish. Three others applying for the same committee as I was had outstanding professional credentials related to environmental engineering and energy conservation. I chose to emphasize my communications skills along with my knowledge of the city’s urban forest.

One young man who was an amateur boxer and had grown up in local youth clubs wanted to help others gain the support and affirmations that had meant so much to him by serving on a commission devoted to inclusion and diversity. Another was an attorney who had recently moved to the city and wanted to help with human rights issues that included, most recently, the use of police body cameras. And that’s just about half the people at the virtual meeting.

If Covid hadn’t forced us to attend online, I never would have heard all those wonderful stories. It made me feel really great to know that these people exist. Best antidote ever for all the dark news these days.

And, yes, I made the cut. Final step is an interview with the City Manager’s staff. Even if I don’t get picked, I know that some caring and talented people will be selected. That’s all that really matters.

Here’s hoping 2022 brings more light to us all. Best wishes for a healthy, uplifting New Year.

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: Harrison Steen

Party Crasher

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Just when it seemed like we could finally enjoy a semi-normal holiday season, with safe family gatherings if all are vaccinated, and even the possibility of eating indoors at a restaurant again post booster, along comes Omicron.

We still have a lot to learn about what appears to be a highly contagious Covid “variant of interest.” It will be a couple of weeks before scientists can determine if Omicron can defy the vaccines, although there is reason to believe that the vaccines, especially with a booster, will still protect against serious illness.

In any case, the same safety precautions continue to apply: get vaccinated, get a booster if you’re 18 or older and at least six months out from your full dose, wear a mask in public, practice social distancing, and get tested if you are exposed to someone who has Covid or if you have symptoms.

I am trying to focus on the positive. I’m really grateful that our family are all boosted. We had a great visit with extended family over Thanksgiving weekend, all were vaccinated, and it felt like the Before Times. And so far, so good, I feel fine. I hate having to wear a mask in public, but I can deal with it. It does not impinge on my personal liberty. I am glad to do my part to protect myself and others.

Perhaps this latest development will finally convince the hold-outs to get the jab. Probably that’s wishful thinking. Clearly, more vaccines are needed throughout the world to save lives and make the transition to just another virus we learn to live with.

And so, the pandemic drags on. 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.

Image: Bernard Hermant