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Reflections on the Messy Complexity of Chronicity

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mindfulness

A Question of Identity

Evelyn Herwitz · March 5, 2019 · 4 Comments


According to a well-known poem, March is supposed to bring breezes, loud and shrill, to stir the dancing daffodil, but so far, this most unpredictable of months just brought us a foot of snow. All area schools were closed on Monday, including the Goethe Institut in Boston, where I have been taking German classes since the fall.

I was quite disappointed. I look forward to my Monday night class each week. Not only is our instructor great, but also my classmates are a fascinating group of adults, from many walks of life, with many different reasons to pursue this singular goal: learning to speak and read German.

My own desire was sparked by our European trip last summer to honor the memory of my great grandparents, who died in a concentration camp near Prague in 1943. Our visit to Terezín and the Stolpersteine ceremony commemorating them in Berlin impacted me deeply, in ways that I found very difficult to verbalize and am still sorting out, months later. Upon our return, I suddenly realized that I needed to learn their language, the language of my mother and her parents and all my German ancestors, to process what is still beyond words for me in English.

This has turned out to be a highlight of my week. I am no foreign language maven, and I am forcing some rusty synapses in my brain to start firing again. But I am loving the challenge. Doing my homework—Hausaufgaben—is fun, a meditation of sorts that completely clears my mind of all noise and worries. There is just the puzzle to solve: How do you say that? What does it mean? How do these words fit together? How does it differ from English? Why are the words arranged that way? And how is the way that Germans think and express themselves—the way my mother as a child and her family thought and loved and argued and dreamed—how is that defined by and encapsulated in their native tongue, in a way that was passed down to me without my even realizing it?

So much of who we are is framed and molded by the words we use to interpret the world. My mother and her parents were formal people in many ways. So when I learned that, in German, you use the formal version of ‘you’—Sie— for addressing someone older, officials, and anyone you don’t know well until you’ve met them a few times, it suddenly all made perfect sense to me. That careful adherence to rules of social etiquette conveyed to me directly and indirectly by my mother was the way she learned to understand the world from her first spoken words. Such is the power of language.

When she was dying, 20 years ago this April, my mother reverted to German. Over and over, she murmured, nein, nein, nein—no, no, no. I will never know what she was referring to. I wondered if she had traveled back to her childhood, when she had to leave her homeland to escape the Nazis. So many years later, I wondered, had a part of her remained forever trapped in a time capsule.

The search for identity is a lifelong quest. We can become mired in tragedy, loss, trauma, a chronic disease that profoundly alters our whole way of being, and let that become the focus of how we define ourselves. But I’d rather keep pushing, discovering, learning more about the world within and without. I don’t know where this new passion will lead me, but the journey fascinates.

So, until next week, auf Wiedersehen.

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: Berlin graffiti seen last summer near Alexanderplatz

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

High Wind Warning

Evelyn Herwitz · February 26, 2019 · Leave a Comment


Monday morning. I awake to wind, rushing and subsiding, like an angry tide. A quick check of the weather forecast on my phone reveals high wind warnings all day, with gusts over 50 miles per hour throughout the afternoon. I have to drive into Boston for an evening class. I imagine a tiring commute, fighting the wind, but am determined to go, despite plummeting temperatures.

As I make the bed and bandage my chronic thumb ulcers, I listen to the The Daily podcast by the New York Times. Today’s topic: whoever controls the incipient 5G network, which will integrate all things hooked to the Internet—self-driving cars, smart TVs, home security systems, communications networks, the power grid, artificial intelligence, our brains—will basically control the world. This is the new Cold War. The wind howls outside. I sit cross-legged on the floor, try to quiet my mind and meditate.

While cooking oatmeal and boiling hot water for tea, I call the lab that has sent me two invoices for recent bloodwork stating that we owe $150 because the claims were rejected by our insurance. This happened while our COBRA administrator had not yet told our insurance company that we had renewed our policy back in January, so I have to get the lab to resubmit.

I work my way through their phone tree until I reach the customer service line, which promptly puts me on hold. I put the call on speaker and stir the oatmeal. Winds rush through trees and around corners. I sit down at the kitchen table, sip my tea and begin to eat my comfort food. Peppy music crackles through the phone, interrupted momentarily by a male voice: We apologize for the delay. A customer representative will be with you soon. Your call will be taken in the order it was received.

Over the cycling music, another male voice cheerfully ticks off all the possible lab tests I could consider: prenatal screening with a non-invasive blood test that could inform expectant parents of any chromosomal abnormalities at ten weeks, an eight year risk analysis for diabetes, a comprehensive heart health profile. I wonder about lab test results in a world of 5G interconnectivity. Who will have access to what about me in the future? Who does already?

Eight minutes in, a woman takes my call. She asks for the invoice number, my name, address, insurance policy ID, group ID (name, rank, serial number). I answer. She goes silent. The wind rushes outside the kitchen windows. She tells me to disregard the invoices and that the claims will be resubmitted. I hang up, finish what’s left of my oatmeal, rip the invoices in half and text Al the good news.

I think about the bits of data shooting from my fingers through the Internet to his phone. I think about the digital footprint of this blog, drifting forever in cyberspace. I think about a video clip of three horses galloping away from a swirling wind turbine, seconds before it disintegrates in a powerful storm. As I type, the evergreen boughs of the yew beyond my office window chop and sway in the rushing wind.

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: Benny Jackson

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: body-mind balance, finger ulcers, meditation and disease management, mindfulness, stress

Midwinter Break

Evelyn Herwitz · February 19, 2019 · Leave a Comment

It’s been a busy, snowy weekend—but the best kind of snow. Lovely, fluffy, not too messy or inconvenient. I’m taking a mini midwinter break from writing my blog this week, so I simply share with you one image of the snow on the rhododendron by our back door. Sometimes the greatest beauty is found in the simplest places. Have a good week.

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: mindfulness, resilience

First Attempt

Evelyn Herwitz · February 12, 2019 · Leave a Comment

I’m turning 65 this April. The time has come to apply for Medicare. Especially after a recent scare—when our COBRA plan failed to contact our insurance that we’d renewed our coverage for 2019 and we had no active health insurance for about a week—I don’t want to take a chance on missing any deadlines.

Back in December, Al and I met with a benefits counselor at our local council on aging to find out next steps. Since I have not yet applied for Social Security benefits, and don’t intend to until I’m 70, I did not receive a Medicare card automatically in the mail in January. The counselor advised, if that happened, to apply for Medicare in March. However, I recently read an excellent article in the New York Times that explained the rules in greater detail and found that I could enroll up to three months in advance.

Especially given the threat of yet another government shutdown this coming weekend, I figured I should take care of it this week. So down I went to the local Social Security office on Monday morning to apply. Al had warned me to get there early. I thought I was doing pretty well, arriving around 10:15 (I am so NOT a morning person).

What a mistake. The first sign that I had totally misjudged the situation was the parking lot. Every space in the upper lot next to the office’s front doors was taken. As I looked for a parking spot below, I noticed a steady trickle of people walking to the upper lot, and just a few coming back down.

Even with those hints, I was not prepared for what I found when I stepped inside. The place looked like a crowded airport terminal, with bland, beige walls and rows of people packed into every black vinyl seat. They were all waiting patiently, as if they had been through this many times before, facing a large video screen that streamed information about Social Security benefits and what number was next. I asked the guard who checked my bag how to get a number, and he pointed me to two kiosks. When I typed in my SSN, I got a receipt. My number was 74. On the board, the number was 23.

Within a few minutes, I was lucky enough to secure a seat. I was surrounded by families with screaming kids, a lot of adults chatting with friends or partners, and an atmosphere of pure drudgery. There were three staff members seated at desks only visible beyond glass windows in the wall that separated us from them. I started reading the news on my phone.

At least, when you go to the Registry of Motor Vehicles, there are usually a dozen staffers, and you can pretty quickly judge how long the wait will be by how often someone is called up to a window. Here, it quickly became obvious that numbers didn’t get called in sequence (we went from 24 to 27 to 4), and the wait between numbers was at least ten minutes. I did a little math in my head. At that rate, it would take me at least three and maybe four hours to have my turn.

Now, when you are in a waiting game like this, you have to decide early on whether you’re going to invest in sticking it out. Any longer than about 15 minutes, and you begin to feel you’ve invested so much time already, you might as well go the whole way. I left.

When I got home after running a couple of errands (so the time spent wasn’t a total waste), I went online to find out how to make an appointment for my next venture to Social Security. Lo and behold, I discovered that I could apply for Medicare benefits online. Of course. I hadn’t even thought to look in the first place. I guess that’s because I’m almost 65 and still think in terms of doing important business in person.

The whole process took about 15 minutes. I can check status of my application online through my Social Security account. I assume I filled everything out correctly. We shall see. At least I applied with enough time (I hope) to correct any errors. And if I do have to get back down to Social Security in person, I will make sure to force myself out of bed early, get there when the doors open—and bring a book.

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: Social Security Administration via Wiki Commons

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Filed Under: Body, Hearing, Mind, Sight Tagged With: managing chronic disease, Medicare, mindfulness

Excuses, Excuses

Evelyn Herwitz · December 4, 2018 · 2 Comments

My desk is a mess. So is my office. Stuff is being fruitful and multiplying when I’m not looking. Honest.

I blame this cluttered state of affairs on my hands. It’s hard to pick up piles of paper and sort and file, because I’ll inevitably bang my fingers. There’s not enough room to properly store my books. I need to have that stack here and this stack there for easy reference. Right.

Then again, I like having lots of interesting stuff around me when I work. There are my little turtle statues to play with. And a bronze T-Rex that I got when I was maybe five years old at the Museum of Natural History in New York. And a cube that I can rearrange to show various paintings by Edward Hopper, depending on my mood.

Of course, I must have at least two pens nearby and a red marker and yellow highlighter and pencils to keep track of my work progress in my handy Bullet Journal. (Yes, I’m addicted.)

And how can I NOT have that pile of reference books on the side of my desk? Or those mail solicitations that I need to remember to follow up? Or those really cool beads that I bought on sale last week to string into a necklace?

Then again, it would be nice to have a clear space in front of me and to get rid of those papers I really, really need to shred, already. And move that stack of old files to the cabinet in the basement. And make some decisions about what stuff is truly necessary.

Al has offered his hands to help anytime. Maybe when I can no longer move in here, I’ll take him up on it.

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: body-mind balance, finger ulcers, hands, mindfulness, resilience

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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…

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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.

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