Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Make Way for Ducklings

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I haven’t seen my sister in two years—that is, until this Sunday, when we got together for a beach-side picnic in Maine. She and my brother-in-law had finally been able to venture east (delayed a year due to Covid) to visit their eldest daughter and her husband. So Al and I and our eldest daughter drove up to see them for the afternoon. The weather cooperated, the food was delicious, and it was great to visit again, in person.

Despite all that has elapsed in the past two years, however, it also felt as if we were just catching up, like we always have. There is something very odd about how time collapses in our post-vaccination transition. For me, at least, there are no crashing cymbals or pyrotechnics when I get together again with people I’ve missed. It’s simply as if we are picking up where we left off—a good thing, but surprising, all the same.

We’ve all changed, of course, one way or another, in surviving a once-in-a-century (I hope) global pandemic. For some, the experience has been gut-wrenching, an utter up-ending of home, work, and all they hold dear. I and my loved ones have been most fortunate, staying well, maintaining income, feeling safe overall as we’ve learned important lessons about patience and persistence. We’ve taken advantage of robust means of keeping in touch that mitigate long separations. All of this contributes, I suppose, to the surprising ordinariness of our Sunday reunion.

My sister and I took a walk along the beach, settling on a rocky outcropping to watch several broods of ducks riding the waves. This was actually the most surprising aspect of our visit—each pair of mature ducks (I’m guessing, from my field guide, American black ducks) was followed by at least a dozen ducklings, paddling along in a row. There must have been 50 or 60 ducklings, all together, learning to traverse in choppy surf stirred by a stiff off-shore breeze.

As we watched, one brood came ashore on the rocks, peeping and flapping to shake off the sea, following their parents’ example to fluff their feathers and waddle about. They were utterly adorable.

“What do you think they’re saying to each other?” I asked my sister.

“I’m hungry!” she proposed. A good guess.

I wondered how such tiny, vulnerable creatures would survive in such rough waters. What if they were swamped by a wave? What if they were swept into one of the jutting rocks? And yet, to them, this was just a completely normal afternoon, on a sunny, windy day, on the coast of Maine, learning to swim.

We, too, have, learned to ride the waves of this pandemic year. Reuniting after months and months spent Zooming and masking and fretting about an unknown, unseen virus that could level a death blow without warning, after miracle vaccinations and boredom and relief that the worst really does seem to be behind us, at last—I can think of no better ending, and beginning, than savoring the humbling wonderment of dozens of ducklings, finding their way in the world.

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.

Inclination

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I was chatting with a neighbor the other day, a geographer who studies the impact of climate change, and he told me that in twenty years, Massachusetts may well have weather more like Virginia’s, and Maine will be more like Massachusetts. Certainly feels that way here in Central New England over the past few days, with temperatures hovering around 90° F.

The one advantage for me, personally, is that my spring digital ulcers are finally healing in the heat (with some help from a round of antibiotics). As long as it’s not humid, or so hot that I must relent and turn on the A/C, I flourish in this weather.

So, despite the temperature, on Saturday afternoon, I walked to a nearby park in our fair city, a green oasis in the midst of traffic and stores and homes and apartments. I’ve been trying to build up my physical stamina on this three-mile route, which includes following a circular, inclined path that winds up a hill—a drumlin, geologically speaking, an oval mound of moraine left behind by a receding glacier millennia ago—to a clearing at the top, where there’s a flagpole and some granite benches. I made it without stopping to catch my breath, this time, an accomplishment. A pleasant breeze and the canopy of trees kept me comfortable along the way.

As I walked the spiraling trail, I recalled something from high school physics, how the angle of an inclined plane affects the amount of effort it takes to move an object upward. The trail’s gradual slope was a perfect example. There were a number of detours, paths that led more sharply up to the top, which I avoided, because they would have required too much exertion. No, I just kept walking gradually higher around the hill, which enabled me to maintain an even stride, manage my breathing, and keep going.

At the flagpole clearing, I rested on a bench and watched a jet high above, tracing a line that disappeared behind a large cumulus cloud, waiting for it to reappear as it flew farther west. I listened to the hum of traffic below, beyond the trees, and a loud voice on a speaker somewhere ranting about something. I hummed a melody and waited for my heart to stop pounding from the climb, gradual as it was. I inhaled the fragrance of flowering trees and evergreens. I wondered who came up here to mow the grass. I prayed for insight about our troubled country and planet and how to find my role in all of this. I left when the jet disappeared behind another cloud, and began my gradual descent.

I didn’t get any big answers to those big questions, which hover in my mind every day. But the spiraling walk up the mound-print of an ancient glacier has given me an inkling—that for all the valid urgency of the present moment, there is also value to patient inquiry, to slow and steady progress, to finding answers that stand the test of time. For one who needs to conserve energy on the climb, as age and scleroderma dictate, that’s the path I’m inclined to follow.

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: Zoltan Rakottyai

Nosebleed Section

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There are many aspects of last week’s writing retreat in Maine that were wonderful: intense focus on my novel, no-one to answer to but myself, beautiful beaches to walk nearby, quiet. I made real progress and hit all my revision goals. There is still work to do, but in four-and-half concentrated days, I accomplished what would have probably taken me two months. By the time I left my little rented cottage on Friday morning, my brain was fried, but I was elated.

That is not to say, however, that the trip was free of interruptions. There was the SNAFU with non-functional WIFI for two days, which turned out to be mostly Spectrum’s fault. (Fortunately I had downloaded my manuscript from the cloud prior to leaving.) There was also the delivery of a new stove and refrigerator, which had been delayed by the pandemic. There was the owner’s angst over grease stains on the new kitchen rug, due to the aforementioned delivery. My experience writing in a news room decades ago came in handy, and I was able to ignore the commotion in the kitchen and still write while all that mishegas was going on.

Then there was the nosebleed. From time to time, because my nose is quite dry due to Sjogren’s Syndrome, which can often accompany scleroderma, I experience nasty nosebleeds. I’m careful with saline sprays and rinses to help keep my nasal passages moisturized. But it can get the better of me. The weekend before I left, I had a gusher on Sunday that took at least a half-hour to bring under control. Then, the Saturday before I left, I had another spontaneous nosebleed from the back of my nose, which took at least 45 minutes to stop.

Worried about the trip, I called my clinic to see if I should go to urgent care for an exam. The nurse took copious notes and checked with the covering physician, who said there was no point in being seen, since the bleeding had stopped, but to be sure to keep my nostrils moisturized. He said to beware of saline, which can also be drying (this I’ve also learned from experience), but added a tip: use a small amount of Vaseline inside each nostril. This sounded rather odd to me. I thought it might affect my breathing or sense of smell. But I decided to try it out.

To my amazement, the thin coating actually felt good. As I packed the next morning, I made sure to have my new little jar of Vaseline, plenty of cotton swabs and tissues, plus cotton balls and decongestant spray if I had another bad bleed. I was relieved to drive all the way to Maine, unpack, shop for food, and make supper without incident.

Just as I was doing my dishes, however, I suddenly felt the bleeding start again in the back of my right nostril. Though not quite as bad as the previous day, which involved both sides, it once again took at least 45 minutes to control. I was not happy. After calling Al to discuss options, and calling my clinic after hours, I was able to speak once again to a nurse who said if it happened overnight, I’d need to go to the nearest ER (15 minutes away in Portland). If I had another bleed in the day, I should go to urgent care. And when I got home, I should call my doc for an ENT referral.

I called Al back and told him I was going to power through this. “No way I’m going to let a f-ing nosebleed stop me from doing this after thinking about it for years and finally getting here!” I said. Thank goodness, the combination of Vaseline and sea air seemed to do the trick. Eight days later as I write, even in drier air back home, I haven’t had another episode.

And here’s the thing: I’ve had Sjogren’s for decades. I’ve seen ENTs before. I’ve dealt with many nosebleeds. No one ever told me about the Vaseline. If you have the same problem, I hope it helps.

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.

Gone Writin’

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For six-and-a-half years, I’ve been working on my novel set in World War I. And this year, I finally carved out five days to sequester myself near the shore and focus on what is now the eighth round of revisions. Here’s the view a short walk from my little Maine cottage.

More next week. I hope you all are pursuing your dreams, too. It’s never too late . . .

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.

The Things We Take for Granted

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I updated my computer on Monday. That is to say, I transferred data from my six-year-old iMac to my new iMac, so that I could give my old iMac to Al, because my really old iMac that he was using for several years finally up and died. It was time for an upgrade, anyway, and so I made the business investment. I’ve favored Apple computers for more than a decade, now, not only because they’re so intuitive, but also because the keyboard is very easy on my hands. Any other computer keyboard feels like I’m banging on an old manual typewriter—that is to say, painful.

Things did not go smoothly. Following Apple’s instructions, I updated the operating system on my old iMac to the latest version before trying to transfer data between the two machines. But the new iMac, to my surprise and annoyance, did not have the latest OS version. So I had to first update the new iMac.

Issues arose, so I spoke with a very patient Apple tech support guy for at least an hour, trying to get the two machines to speak to each other. At last, the data transfer began successfully. Expecting it to complete overnight, I went upstairs to bed. Shortly after I woke up Monday morning, I checked progress. My old iMac had shut down 12 minutes before the multi-hour transfer process had completed. Back to Square One.

And so, I started the process all over again, with more Apple tech support. My biggest issue, other than tossing my entire morning out the window, was that I had to run a Zoom meeting at noon, and the estimated time for the data migration to complete was about five hours.

My only other option to run the meeting was my aging MacBook Air, which has not worked properly for at least a year because its memory is clogged up (hmmm, sounds familiar). So I asked the tech gal for help with that. She ended up handing me off to one of their senior tech gals, who spent another hour with me trying to free up memory. We never could figure out the basic issue, but I was able to meet my Zoom deadline.

I have to say that Apple support guys and gals are great. Knowledgeable, patient, and really try to help you solve the problems. A good thing, because the next issue arose when I tried to print from my now up-and-running new iMac, and my printer wouldn’t respond. Searching for info about the printer, whether it needed a new printer driver, etc., etc., only confused me more. So I called Apple support once again.

This time, after checking all the obvious stuff (so I thought), the tech support gal asked me if my printer was on the same wireless network as my iMac. Lo and behold, the WIFI had disconnected when I had unplugged the printer and plugged it back in, in the process of prior finagling with all the plugs and wires involved in the data transfer. I was able reconnect the printer to the WIFI and . . . it worked!

So, other than some more annoying app housecleaning, I am now writing on my new iMac with pleasure. And here comes the obvious conclusion: We’re so dependent on our computers. They are amazing tools when they work as intended. They are utterly frustrating when they don’t. If I’d been smarter, I would have set aside an entire day to make this transition, knowing that something would inevitably go wrong.

But these are problems that come with the privilege of being able to afford a top quality desktop computer—even as it’s essential to my work as a writer. I recognize this. I’m very grateful that I can do this. And I hope I won’t need to do it again for at least another six years.

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: Wilhelm Gunkel