Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Act One

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Another Nor’easter on the way in Massachusetts, with up to a foot of snow expected here by the end of Tuesday. As long as we retain power, I’m not concerned. I just wish it would come on a different weekday. Twice we’ve had heavy snowfall on a Tuesday, which means I can’t go to my acting class in the evening.

Yes, I have started taking acting lessons this winter. I had been thinking about this for at least a year. There is a conservatory associated with a local theater in our city, and they offer all kinds of lessons in the performing arts for children, teens, and adults. Why acting? My main motivation is a desire to be able to sink more deeply into the characters I create for my fiction. Acting lessons seem like a fruitful way to get there. But I also have long wondered what it would be like to act in a play as an adult.

The last time I was on stage was in the sixth grade. Our elementary school principal set a high standard for the annual spring festival. Performances included versions of Mozart’s The Magic Flute, Gilbert and Sullivan’s The Mikado, and Puccini’s Gianni Schicchi. The dialogue of these operas was both spoken and sung, all in English, and plots simplified. Parts were reserved for the fifth and sixth graders, and my older sister starred in both The Magic Flute and The Mikado. Costumes were designed for these two productions by our principal’s friends in the New York City theater world, and they were spectacular.

By the time I was in sixth grade, budget constraints had put the kibosh on those wonderful garments, and moms were assigned the role of seamstresses. The production that year was Prokofiev’s The Love for Three Oranges. I landed the role of the evil Princess Clarice, who plots to kill the prince so she can succeed him on the throne. The one line that I recall singing was, “Poison, or a bullet!” My sister coached me in a dramatic delivery.

In high school, I was never able to get a part in any of the school plays. The drama kids were a tight clique, and I did not fit in. So I gave up.

Until now.

I’m in no hurry to act on a stage, but I am gaining courage from the two classes we’ve had so far, to play “acting games” with and in front of my classmates. There are eight of us, four men and four women, plus our talented instructor. I’m the oldest, and the youngest is probably in his mid- to late-twenties. Two of the guys have acted in community theater and want to get training that they’ve never received. The rest of us are all newbies, pushing out of our comfort zones. Everyone is enthusiastic and has a great sense of humor.

The games vary from “Two Truths and Lie” to more complicated assignments. At our first class, for example, one person came to the center of the studio and sang a song, to be replaced by two other people who improvised a scene based on that song, to be replaced by another person who sang a song based on that scene, and so on, until we got back to the original song. It was hilarious.

We’ll continue with these games for a few more weeks, and then we’ll each learn a one-to-two-minute monologue of our own choosing, with coaching from our instructor. The class goes through the middle of May.

I have left both classes feeling totally energized, my brain swirling with ideas. I’ve also surprised myself that I have not felt too self-conscious or hesitant to put myself out there. This has been revelatory for someone who has long been more of an introvert. For many years, having scleroderma also caused me to be more sensitive about drawing attention. That, I am glad to report, has eased considerably, especially in the 12 years that I have been writing this blog.

As for an impact on my fiction writing, that will be a longer process. But in the meantime, classes are a hoot, a boost, and a reminder that you’re never too old to try something new—or something you wish you’d always done.

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: Gwen King

In Praise of Sleep

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I cannot function without a good night’s sleep. Or, rather, I can function, but I’ll feel awful, like I’m moving through sludge.

Most nights, I sleep uninterrupted and feel refreshed in the morning, although it depends on the more-often-than-I-would-like trips to the bathroom at some point around 4:00 or 5:00—a matter of age, and if I drank too much fluid in the evening.

How I feel in the morning also depends on whether an alarm wakes me in the middle of a dream. If that’s the case, it will take me longer to orient myself and get going (which is a long process, anyway, given hand-care and eye care and stretching exercises and the time it takes to get dressed). It also depends on how weird the dream is. And I have weird dreams.

I wake up most refreshed without an alarm, when daylight filters through the bedroom shades. That’s how we’re supposed to be, I suppose. Given that I’m an owl, not a lark, I often don’t get to sleep before midnight. Daylight around 7:00 arrives at just the right time for a seven-hour night. That’s also when the heat comes up in our home, which at this time of year is essential for me to get myself out of bed.

There’s plenty of research that explains why sleep is so important to each of us—for physical and mental well-being, absorbing and processing new information, retaining memory, paying attention. Especially for those of us living with chronic medical conditions, sleep is essential for healing and staying as healthy as possible.

There’s also plenty of good advice about sleep hygiene, how to create the conditions to help you get a good night’s sleep. For me, most nights, getting to sleep is not a problem, so long as I haven’t eaten too close to bedtime, have turned off the news before I’m ready to turn in (absolute necessity), and have a good book to read until I start yawning so much I can’t read anymore. Getting to sleep is easiest if I’ve exercised during the day, especially walking outside in fresh air.

On those nights when sleep eludes me, or I can’t get back to sleep after an interruption, I’ll start ruminating. Listening to a meditation sleep-cast usually, but not always, does the trick. But even if I can’t go back to sleep,  I try to stay in bed and count backwards from 100 or try to recall all the state capitals, just to rest my joints if not my brain.

And if all else fails, and I’m dragging during the day (more true in cold weather, which makes me want to hibernate), I’ll lie down and take a 20-minute rest or power nap to rejuvinate. This is most likely to happen around 2:30 in the afternoon, the low point in my daytime circadian cycle.

When I do need that break, I am very grateful that I work for myself at home.

And so, Dear Reader, here’s to a good night’s sleep on a regular basis for us all. Be well.

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: Cris Sauer

Home Improvements

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At long last, our kitchen ceiling is being repainted. This after, at long last, having the recesses of our two kitchen skylights repaired, a few years after the skylights and kitchen roof were replaced, after years of dealing with leaky skylights.

As you may correctly surmise, neither Al nor I are pros at home improvements. Al, by his own admission, is not Mr. Fix-It. I can see what needs to be done and how to do it, having learned from years of watching my dad fix just about anything. But I can’t physically do what needs to be done, because of my hands.

This is a source of endless frustration.

Years ago, when Al and I married and bought our first home, we worked side-by-side painting ceilings and window trim. Despite a few paint sprinkles on my glasses, I was able to adeptly use both roller and brush. Al did a great job wallpapering every room. I sewed drapes. This was before my scleroderma advanced to the point of really damaging my fingers.

Today, the idea of picking up a paintbrush or roller is a non-starter. I wish I could build things like my dad did, but wielding a hammer, even just to nail a picture hook, is a real challenge. I can still make things that are small or soft—sewing remains a favorite hobby, as long as I pace myself over weeks and even months. But no projects that are heavy, sharp or cumbersome.

So, instead, I have become adept at screening painters, carpenters, roofers, and other home improvement experts, to find the best work for the best price. If you can’t do, delegate. That’s the second rule of management.

The first one: know what you can’t do, and get over yourself. Easier said than done.

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.

Bounce-back

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As I write on Monday afternoon, the shadows of our yews dance on the window blinds of my home office. It’s a marvel, how they’ve bounced back—literally—from last week’s heavy, wet snow. Seven days ago, their evergreen boughs bowed low. Today, they reach again to the sun, trembling in a light breeze.

It’s cold outside, in the teens when I woke up this morning. Not as cold as one friend reports on FaceBook from her home in Montana, where Arctic temperatures hover well below zero. That, I could not tolerate, literally. This cold blast I can live with, at least temporarily. And there is my annual source of relief in mid-January: daylight is already becoming noticeably longer.

Often, these days, I think about how the only thing that is real is what is happening right now, in the moment. One day, we were digging out from more than a foot of snow. A few days later, the sun is bright and our hardy New England evergreens have recovered. A lesson in resilience.

Yews have evolved over millennia to grow springy boughs that aren’t broken by heavy snow. For us humans, resilience must be learned. Whether in response to chronic disease or dark news or whatever else is weighing on our hearts, resilience requires cultivation, attentiveness, experience. It takes practice. It takes patience. It takes living in the present and maintaining a long perspective.

But it is not a passive posture. If there is anything I’ve learned from living with scleroderma for more than 40 years, it’s that resilience also requires a willingness to face the present with a clear understanding of what is happening, what’s at stake, and how best to respond. For me, resilience is also a matter of faith and of trusting my intuition when facts and answers are murky.

That is not to say that I always feel resilient. I have to work at it, every day. There is much in this world that weighs heavily on my heart. All the more reason to sit back at my desk and study the pattern of dancing yew boughs on my window blinds on a cold and sunny Monday afternoon.

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.

Through Rain and Gloom

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It’s another one of those weeks when I have a cluster of medical appointments. And they involve a lot of driving. Monday dawned with a deluge of rain, which made the prospect of driving into Boston yesterday morning all the more delightful. Wednesday, the next double appointment day, will at least be sunny.

Both ways yesterday, the driving was intense. Visibility in the worst of the Nor’easter downpour (at least without snow, thank goodness) was about ten car-lengths. And, of course, there were some geniuses on the Mass Pike who chose to ignore all the electronic signs that observed that “wipers on means headlights on” and oh, by the way, this is the law.

The one big blessing in all this was that traffic was not nearly as heavy as usual, perhaps because people are taking off for the holidays ahead of time, or because they were smart enough to stay home. Despite all the rain, I was able to make the drive in a little over an hour, even driving below the speed limit.

I could have canceled and stayed home. But appointments are hard to come by, there’s never a convenient time, and I didn’t want to wait another few months to reschedule.

Most importantly, it was good to have my dental check-up and learn that my teeth have not resorbed more. It was also good to see my wonderful cardiologist, who gave me an A+ on my ECG and said my Type II pulmonary hypertension seems to be well-c0ntrolled with my current medication. There’s no cure for it, but I’m holding steady. And I need to exercise more. I know, I know. I will try to do better.

I was tired when I got home, but I made it safely and got the reassurances I needed that all is well, all things considered. Worth driving in a deluge.

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: Jessica Knowlden