Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

Time Warp

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Years ago, when our daughters were young, we used to vacation every summer on Block Island, off the Rhode Island coast. Back then, it was still affordable to rent a cottage for a week. The island was quaint, quiet, family friendly, with lovely beaches and nature trails to explore.

Thirty some-odd years later, other than real estate prices, which average in the millions of dollars, and very expensive rentals, the island remains in many ways frozen in time, with much open space still protected by the Nature Conservancy. As you approach on the ferry from Point Judith, the waterfront looks almost exactly as it did on our first arrival, when our eldest was barely three years old.

So it was on Sunday, when the four of us made a day trip to Block Island together for the first time in about ten years. There is something immediately calming as the ferry backs into its dock, to see all the familiar old hotels and the flag gaily waving atop the cupola of the National. We had planned a weekend on the Block last summer, and I’d rented a great house and secured our ferry car reservation, when, of course, the pandemic scuttled all that. While we couldn’t do a weekend this year, at least we could make a full day of it.

I’d originally hoped we could rent bikes to ride around to some of our favorite spots, but that was not to be. I haven’t ridden a bike in decades, and when I tried one out, I could not balance—something to do with inner ear issues that have been plaguing me for several years, now. Mopeds, which we’ve always avoided, turned out to be not the best option, either (we did check them out, but decided to pass).

Instead, we found the most affordable alternative: walking and taking taxis. Our first stop was the town beach, where we ate lunch that we’d brought along, rested, swam (Al never misses an opportunity to jump in the waves), and walked the shore. As my eldest said, it’s just relaxing to lie there and listen to the surf and the friendly chatter, not too crowded, not too boisterous. Just families of all kinds, having a good time.

Then we caught a taxi to what’s known as “the Spit.” This is at the northernmost tip, near the North Light, where ocean currents from either side of the island slap together as waves cross paths, foaming and spuming. It’s a long, challenging walk for me from the parking lot over rocks and sand, but well worth the trek. Along the way, we were treated to a pair of fledgling, fluffy grey sea gulls, peeping to their mother, who kept close watch as they wandered near the dunes, and at least eight seals playing in the surf, popping their long black heads above the water before diving gracefully out of sight. We also harvested handfuls of sea glass.

On our taxi ride back into town, our friendly driver, who came to the island 42 years ago for a visit and decided to stay, slowed down to show us a pair of breeding ospreys. Our very first visit to the island in 1991 occurred in the midst of Hurricane Bob, which passed directly over. Turns out our driver was in charge of one of the evacuation sites during the storm, at the medical center. We had found shelter for the day at the only school on the island. So, we reminisced. Far from scaring us off, the hurricane only endeared us more to this special place. It was on that trip, as well, that I realized I was pregnant with our youngest, and Al and I joked giddily about names for the baby starting with B.

Sitting on the top deck of the eight o’clock ferry back to Point Judith, after a delicious fish dinner, the ritual visit to the Ice Cream Place, and noodling about the shops, we said goodbye to the North Light winking over the Spit as the sky turned dusky. Halfway on the hour’s crossing, just above the slate blue mainland, fireworks sparkled.

Magical, once again, if just for a day, to slip back to simpler times, with my dear ones.

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.

Stepping Out

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Al and I didn’t have any plans for July 4th. The weather was chilly and rainy on Saturday, and more of the same was predicted for Sunday. But we lucked out. Sunday was still overcast, but no rain predicted. So, on a whim, we set out for Newport, R.I., for the afternoon. I hadn’t done the Cliff Walk along all the famous seaside mansions in many years, and Al suggested we also visit the Green Animals Topiary Garden, which I’d never seen.

The topiary and flowers were stunning, and their scent, so sweet and relaxing. Even as my feet were really tired by the end of the Cliff Walk, the views were well worth the trek. By late afternoon, the sun came out. We finished off the day with a delicious Italian dinner, not far, we discovered, from St. Mary’s Parish, where John and Jacqueline Kennedy were married in 1953.

Wherever we went, we heard and saw people from many different countries and backgrounds, the wonderful, rich mix of cultures that makes America truly great. As we drove home, fireworks bloomed on the horizon. A perfect Independence Day.

Profound thanks to all who have worked so hard to get us through the pandemic, so we can feel safe going out again. Vaccines work. Happy Summer. Enjoy the view . . .

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

Tunnel’s End

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On Saturday, May 29, Massachusetts lifted most of our pandemic restrictions. In celebration, the TD Garden was packed for the playoff game between the Boston Bruins and the New York Islanders—which the Bruins won handily, 5-2.

I am not an ice hockey fan, nor would I feel safe going to an indoor arena filled to capacity, regardless of the sport. Too big a risk, too soon, in too huge a crowd. Outdoors, however, for a baseball game in good weather at the new Minor League stadium in our fair city, yes. Looking forward to that sometime in the not-too-distant future.

A week past Al’s clearance from Covid quarantine (he caught a mild case despite being immunized), we’re both doing fine, thank goodness. And the fact that I never caught it from him, due to the vaccine, has definitely given me more confidence—enough to venture indoors to a restaurant with my daughters on Sunday for a belated Mother’s Day meal. Our eldest has been immunized for months, and our youngest was finally able to get both Moderna vaccinations from the university where she works near Philly. So she came for a long Memorial Day weekend, and the three of us had a ladies’ luncheon, their treat.

It was great to get together, and it was also great to sit in a restaurant without worrying about taking off my mask. The place was busy, plenty of people, but still some spacing between tables. We sat near glass doors that did not close completely, so we also had a source of fresh air.

What surprised me was how close to normal it seemed. The waitstaff were still in masks and gloves, which I appreciated. But otherwise it felt like it’s always felt to eat out. Our focus was on the food and conversation, not on any worries about safety. I will be thrilled to put my mask collection away sometime over the summer, when the data confirms the wisdom of eased restrictions, as cases and deaths continue to decline with increased vaccination rates.

Al’s situation going forward is a bit uncertain, however. Given that his immune system is somewhat compromised, we need medical guidance about when/if it would be truly safe for him to go unmasked in crowds. Does the fact that he caught mild Covid and recovered after being fully immunized actually add to his protection? Or does it all depend on the variants that are still evolving? We don’t know, but I hope to get answers soon.

Our experience over the past couple of weeks is just one small example of how vigilance remains essential for those at greater risk, even as the light at the tunnel’s end is now visible. Memorial Day commemorates fallen soldiers, but we’d also do well to remember the 594 thousand Americans who have died from Covid since the pandemic began over a year ago. That’s more than the total number of soldiers who died in World War I, World War II and Vietnam, and on 9/11. And there are still people hospitalized and dying from this terrible disease.

As we venture out of our Covid cocoons, even as we revel in unmasked spaces, I profoundly hope and pray that the majority of my fellow citizens have learned to be more thoughtful about the health and well-being of others still at risk. Please get the vaccine if you are able and have not already, so that this very dark chapter can finally close and we can all, at last, safely move forward.

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: Robert Bye

This Is a Test

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Last week, our home became a testing ground for the efficacy of Covid vaccines. Al was vaccinated back in February, and I was fully immunized by the first week of April. He got Pfizer, and I got Moderna. We’ve been feeling quite confident and relieved since then, although we both still mask in public, as required.

However, for much of April and May, Al has been coughing. At first, I thought it was just a morning thing, but right after Mother’s Day, his cough got worse. By the next weekend, he was clearly not feeling well. No fever, but I suspected bronchitis. So a week ago Monday, he went to the doctor. Sure enough, he had Covid. While he could walk outside and even ride his bike if he wanted, he could not be around other people (except me) and had to work from home.

I, in turn, had a Covid test the day after Al was diagnosed, and was—thank goodness—negative. I took over all the grocery shopping, errands, and meal prep, which we usually share. I’ve felt fine the whole time.

Fortunately, his symptoms steadily improved. He never lost his sense of smell or taste. As all the research has shown so far, the vaccine most likely spared him from a severe case of the virus. By the end of the week, he was hardly coughing at all, and yesterday, he was cleared to be out of self-quarantine.

He was called twice by the Massachusetts Covid contact tracing team, to see how he was doing. We had already notified everyone we had been in contact with in the recent past. But I was impressed by their follow-up and grateful that we have a good system in place here.

So, how is it that Al caught the virus, even though he was fully immunized? Chances are because he doesn’t have a spleen, which is a critical organ in the body’s immune system. Years ago, when we were first married, he contracted a severe case of mononucleosis—not a terribly big deal for young people, but quite a big deal for a 35-year-old man. His spleen ruptured and had to be surgically removed. He came home from the hospital the day before our first wedding anniversary.

While bone marrow compensates for the spleen in a case like Al’s, I am making an educated guess (no research at present to define the relationship between lack of a spleen and Covid vaccine efficacy) that he probably has not been able to produce the full level of antibodies in response to the vaccine. However, current research does indicate that even in breakthrough cases like Al’s, he both had a milder case and also shed less of the virus because he was fully vaccinated. And apparently, my vaccinations have given me enough protection for whatever I was exposed to. Thank God.

I shudder to think what might have happened if he had be infected before being vaccinated. He is more vulnerable than either of us realized. Which also goes to demonstrate how effective masking and basic public health measures are in protecting us all.

Moral of the story: Vaccines do work, even if not perfectly. We dodged a big bullet. And I am very grateful that we’re both okay, as well as others we saw recently. If you haven’t been vaccinated yet, please—for you own sake and those you love—go get it. And be sure to exercise caution around others who may have compromised immune systems, regardless of your immunization status. We truly are still all in this together.

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: Mufid Majnun