Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

Orange Moon

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With August now behind us, signs of fall are everywhere. On recent walks I’ve noticed that our neighbor’s sugar maple is just beginning to shed a few leaves. Nights are cooler. It’s already getting dark by 7:30.

photoBut I’m not quite ready to let go of summer. So it was a gift on Sunday—a beautiful, sunny, warm day—that Al and I made it to one of our favorite beaches on Block Island, just off the Rhode Island coast.

As a child, I loved to swim in the ocean. Our family would vacation on Cape Cod, and I’d always beg to go to Nauset Beach, part of the National Seashore on the Cape’s eastern coast. There I would play in the waves until I turned blue and my teeth chattered. Nothing could stop me from swimming and body surfing.

Decades later, I still love the ocean, but it’s been many years since I could get in the water. Most of the time, it’s simply too cold and not healthy, given my Raynaud’s. But even when the water is warmer (yesterday at Block Island it was 73ºF, pretty comfortable for the Atlantic up here), I can’t risk immersing my finger ulcers in the sea. Too high a chance of infection. One year, when the girls were young, I tried fastening latex gloves around my wrists with duct tape so I could swim, but the water still seeped in.

So I’ve learned to appreciate the ocean in other ways. While Al swam yesterday, I finished reading a novel. We took a long walk up the beach, examining pebbles and rocks, searching for sea glass. I dipped my toes in the water. I took some pictures. I listened to the mesmerizing sound of the waves. And I breathed in the wonderful moist air, which does wonders for my too-dry nose and scarred lungs.

The water is an endless source of fascination, ever changing. Then there are all the birds to watch. One particularly bold—or indifferent—white-and-gray herring gull strutted past me as I read, its yellow eye scanning the sand for leftovers, close enough for me to touch it if I’d dared. (I didn’t.)

As the afternoon shadows grew long, I bundled up in the various layers I’d brought—sweater, sweatshirt, blanket, hat. We left the beach, reluctantly, around 5:30, and walked back into town to find a place to eat dinner. It was still warm enough, away from the shore breeze, to dine outside.

Later, on the ferry back to the mainland, we sat on the top deck and watched the dark shapes of the island’s dunes slip by in the night. Even with the breeze created by the ferry’s forward motion, I was able to stay up top and enjoy the stars. As our boat neared Point Judith, we turned around to see the nearly full moon high over the horizon, casting a glistening shadow across the water. It was huge and orange, the color of summer sunsets and fall harvests.

I couldn’t have asked for a better ending to a great summer.

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.

Walk This Way

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Ever since we got back from vacation, I feel too sedentary. Instead of exploring for hours on foot (true, it was a bit more than my feet could handle), I’m sitting at my computer far too much. Ginger’s no longer here to bop my hands off the keyboard when it’s time to go out for a walk around the block. It’s all too easy just to keep writing and not get any exercise.

walk-on-1445129-639x424So I’m trying to change my habit. I’ve tracked a half-hour walking route around our neighborhood—a manageable distance—and my goal is to get my butt off the chair and out the door at least four times a week.

This is actually proving easier than I expected. In fact, it’s quite pleasant. (It helps to start a walking habit when it’s warm out.) I’ve made it out and about my route at least five times in the past week—even Monday evening, after a sweltering 90-degree day.

Em is home for a transitional break between her summer internship in D.C. and returning to grad school, so she’s joined me a couple of times for a walk-and-talk. On other days, I’ve enjoyed a chance to clear my head and walk in silence. There are plenty of street trees for shade and only a few cars on the side streets to watch out for. We’re fortunate to live in a safe neighborhood with plenty of dog walkers, cyclists, families pushing strollers and other folks out walking or jogging.

Sometimes, I find myself so deep in my head that I barely notice what’s around me. Other times, I try to focus on the colors of the houses and birdsong and gardens as a meditation, staying in the moment. I’ve decided it doesn’t matter which mode I’m in, as long as I stretch my legs, swing my arms and get lungfuls of fresh air for a good, aerobic half-hour.

What if it rains? Depends on how long and how intensely. My alternative is to go to the gym and ride the stationary bike—not as refreshing, but at least I’m exercising.

It remains to be seen how well I can keep this up as the weather gets cooler and, eventually, too cold for me to be outside. But I figure if I establish a solid pattern now, when the walking is easy, my body will get addicted to the exercise and I’ll crave it enough to stick with it.

I definitely feel better when I walk. And worse when I don’t. No doubt about that. I can do it any time I want. Best of all—it’s free.

So, no excuses. Time to get moving.

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.

Photo Credit: Francesco Maglione 

Hands On

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How did it get to be July, already? With Independence Day behind us, summer is really here. It’s sunny and lovely and warm, and my hands are happy. I’m down to two bandages for my digital ulcers, one on each thumb. Always remarkable this time of year when I can feel with most of my fingertips.

photo-24This has been especially helpful because I’ve been sewing dresses. We’re getting ready for vacation, traveling through Europe to mark our 30th wedding anniversary (last December) and to do some research for a novel I’m writing.

It’s been unseasonably hot there (no complaints from me, although I’m encouraged that the forecast does not include temps upwards of 100 F, which was the case this past week). Dresses, as a friend observed, are easy. You don’t need to figure out what goes with what. Just slip one on, and you’re ready for the day.

One of the great joys of sewing is feeling luscious fabrics as your create your outfit. I’m working on a pattern for a wrap dress, and I found a buttery soft, beautiful rayon matte jersey print to sew.

I’ve learned from many mistakes that it’s best to test the pattern and any alterations first, before risking the good fabric, and I found some black and white cotton jersey in my fabric stash—perfect for experimenting.

So now the test garment is completed, and it looks and fits well enough to take along on the trip. I cut out all the good fabric and began constructing the second version on Sunday. It sews and serges like a dream, and I’m on schedule for finishing before we leave.

Best of all, my hands are fine. Despite whacking one finger on my serger and pricking another with a pin, they feel good as I write. I sew mostly by machine. The serger, which sews, trims and overcasts seams all in one step, is a tremendous help, saving time and extra hand motions. Even though it requires a lot of care when threading (and can be persnickety if I miss a step), it is a real boon. My other essential tool is a good pair of bent-nose tweezers, which helps with all the tiny manipulations I can no longer do with my fingertips.

I was marveling at the fact that my hands aren’t sore after all that work, and then I realized that fewer bandages really do make a difference. I’m so used to having at least four or five fingers wrapped to protect sore ulcers that going bare is full of surprises.

Travel will undoubtedly cause me to revert to more digital protection. I have all my supplies plus antibiotics ready, just in case. But in the meantime, I am savoring the freedom and enjoying the feel of wonderful fabric. It’s been a long time since I’ve been able to sew this much, successfully—a real summertime treat.

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.

Hail, Caesar!

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I tried an experiment last week. I had to go to New York City on business overnight. There is no easy, direct public transit from Central Massachusetts. So, because I was in Boston during the day on Wednesday, I took Amtrak to Manhattan, and planned to take a bus back home the following evening. The bus was scheduled to make three stops in Connecticut along the way, including a transfer in Hartford.

247603105_e1a7241212_zI’m not crazy about long bus trips, but the plan saved me from having to drive home late at night, either from Boston in the east or from Springfield in the west, if I had gone Amtrak all the way. 

I thought I was being very organized. I had all my tickets printed out, in addition to the email versions on my phone. For some reason, the bus tickets (one for each leg of the trip home) printed out back to back, which rarely happens on my printer. So I assumed it was intentional to save paper.

Wrong. After a full day’s meeting on Thursday, I made my way to the Port Authority Bus Terminal in Midtown and found my gate. Then I noticed, to my dismay, that everyone else in line had two tickets—one to Hartford, and one to their connection.

When it was my turn to present my ticket and photo ID to our driver, I explained my dilemma and asked if I could just show him the ticket and keep it for my transfer. No, he informed me, he had to take it. They don’t accept electronic versions. Only paper. I needed to reprint my ticket when I got to Hartford.

Now, we had 15 minutes in the schedule to transfer busses. I knew the Hartford bus station was small. But I was nervous. And frustrated. If only I’d thought to make a second copy, just in case. After everyone was on the bus and our driver was finishing his paperwork, I asked him again if there was any chance I could show the PDF on my phone to the other driver. No, he reiterated, but he was sure I’d have enough time to take care of it in Hartford.

Nothing I could do but wait the three hours until we got there. We pulled out of the below-ground gate and up into traffic. Lots of it. Our driver welcomed us on the bus and introduced himself as Caesar. If it was too hot or too cold, he said, let him know. No loud phone conversations or music. No photos. I watched a flock of pigeons battling over something on a sidewalk and told myself there was no use getting upset. I just needed to sit back and see what happened.

By the time we got to New Haven, our first stop, we were already 20 minutes late. I was trying my best not to freak out. I called Al and gave him a head’s up—if I couldn’t make my connection, I needed him to drive over an hour to pick me up. Fortunately, he was his good-natured self about this delightful prospect, which at least eased the pressure.

For reasons unknown, on the way to our next stop, New Britain, we got off the highway and onto a series of side roads and byways lined with strip malls, then back on the highway. That put us behind by 25 minutes. I had no idea where we were, so I followed our route on my phone app, just to reassure myself we weren’t lost.

Finally, we pulled into Hartford, a full half-hour behind. I had traded seats with my seat-mate to be on the aisle and able to get off sooner. Caesar told us the gate number for our connection. By a miracle—or, rather, the inefficiency of bus travel—that bus was late, too, and had not yet arrived. So I grabbed my bag and ran to the ticket counter.

The ticket agent was, of course, helping someone else. And. Taking. A. Long. Time. I asked if I could just reprint my ticket, and she told me to wait my turn. Then she announced that her computer was not allowing her to print the other customer’s ticket. Meanwhile, the connecting bus had arrived.

I was at a loss for what to do. Fortunately, Caesar had come to the ticket counter. I’m not sure if he would have checked in anyway, or if he was following up on me. But given that we’d arrived late and he was due in Springfield, he could have just left. Instead, he walked with me back to our bus, pulled out his envelope of tickets, found mine, walked me back to the ticket counter and asked the agent to make me a copy. Of course, the copier was off and needed to charge. Did I mention this is not a 21st century operation? But within a couple more long minutes, it fired up and I had my copy. I thanked Caesar profusely and ran to the connecting gate.

I was the last person on the bus. We sat for another 10 minutes, for reasons unknown, and then departed. I called Al to let him know I’d made it.

“I guaranteed you would,” he said.

“How?”

“I just looked up the directions to Hartford.”

We laughed. Thank goodness. In the end, I made it to our own Union Station just 15 minutes later than I should have and was very glad, indeed, to see Al waiting for me with an open car door.

My knees were shot from the bus ride, with its cramped seating and worn out shock absorbers. And my nerves were a bit frayed. I was really tired. But if it weren’t for our driver, who took the extra few minutes to make sure I was able to make my connection—despite the fact that I was the only one on his bus who did not know the rules of the archaic ticketing system—it would have been a much longer ordeal. Maybe he took pity on me. Or maybe he thought it was ridiculous, too.

Hail, Caesar.

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.

Photo Credit: Daniel Lobo

Beta Test

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This summer, I’m in charge of Emily’s fish. He’s a cobalt blue Beta named Stitch, and he lives in a large glass bowl on our living room mantel, our little guest while Em’s away at an internship for her master’s degree program.

So far, I’ve succeeding in keeping him alive. This is remarkable, because when our girls were in grade school and went through a phase of having Betas (notice the plural), at least three of them died in fairly rapid succession.

This may have been due to the fact that we kept the fish bowl on top of the shelving that held our TV, and the water could have overheated. Or, more likely, it may have been due to the fact that I tried to clean the bowl and change the water every so often and probably shocked the poor fish to death.

This time, all I have to do is give Stitch two pellets of food every morning and add a little distilled water to his tank when the level drops by about an inch. Easy enough.

It took me a few tries to figure out how best to give him the pellets. They are very tiny, and I can’t grasp them with my fingers. So I scoop them out of their bag with a plastic spoon. Then I drop them into the water, being very careful not to drop the spoon in the water, too. That would not go over well.

For Stitch, this is the highlight of his day. As soon as I walk over to his tank and say hello (yes, I do talk to him), he swims over and jiggles around, fluttering his translucent blue flippers in what I can only describe as great fishy excitement. He doesn’t always find the pellets right away, so I tap the bowl in the right direction to give him a hint. Then he gulps them down. And swims back to see if I’m going to give him any more.

At this point, I say good bye and walk away, so as not to raise his expectations that there’s more food to come.

Really, it’s amazing how much you can commune with a fish.

I wonder what he’s thinking in his little Beta brain. Clearly, he’s learned how to recognize me, even if he doesn’t have a clue who or what I am, other than his source of food. I wonder if he hears the music on the stereo or the radio. Or our voices when Al and I are talking.

Mostly, he just floats gracefully around in his bowl, up and down, around and around. Sometimes he sleeps. Sometimes he zig zags. Sometimes he flutters. He seems content. Nothing to do, but just be.

I almost forgot to feed him one day last week—trying to do too much in too little time, juggling a lot of projects and family events and other responsibilities. I’m traveling on business again later this week, and I’ve been pushing to finish one thing and another before I go away overnight.

I’ll be sure to say goodbye to our grandfish before I leave (Al’s in charge while I’m away). And try to remember, in the midst of all my busyness, what Stitch does so well—just be.

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.