Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Hats Off

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It’s Election Day here in the U.S. I write this with some trepidation. There is so much misinformation, so much distrust, so much othering of each other. It is also an extremely important Midterm election, with a lot at stake.

But I’m not going to dive down that dark rabbit hole, where I’ve been spending all too much time of late. Instead, I want to express my gratitude to all of the citizens around this country who, despite some significant risks to their personal safety (a tragic and pathetic reality), are staffing election sites today. I have several friends here who are poll workers. They do an incredible public service.

From them, I’ve learned about the meticulous process of counting ballots, recording that data, sorting ballots by ward and precinct, and securely delivering the ballots to the City Clerk’s office. It’s a long, rigorous endeavor that takes many, many hours. To these civic-minded volunteers, I say a heartfelt thank you.

We have a lot to be grateful for in this country. It’s up to each and every one of us to make sure we participate by voting—and by respecting the election volunteers who give of their time and effort to ensure a fair and accurate count of those votes. Without their commitment, especially in times like these, we would be in dire straits, indeed.

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: Elliott Stallion

Guinea Pig

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Over the four decades I’ve had scleroderma, I have occasionally participated in research. One of the first studies I signed up for was in the mid-’90s, a trial of medications for Raynaud’s at Boston Medical Center. It was a randomized double-blind study that involved taking a daily pill, recording my experience with Raynaud’s in a journal, and coming to BMC every so often for a check-up with the lead investigator, the late Dr. Joseph Korn. Dr. Korn was responsible for BMC becoming a research center for scleroderma, and his successor, Dr. Robert Simms, became my rheumatologist until his retirement a few years ago.

Which is to say that, even though I’m pretty sure I got the placebo in the Raynaud’s study (no improvement), the long-term benefit was that I ended up being treated by one of the top scleroderma rheumatologists in the U.S. as a result of my participation. I also realized, after driving into Boston on a semi-regular basis, that I could expand my options for work to include that city. Indeed, within about a year, I landed a job as marketing director at a small college in a Boston suburb, a position I held for a dozen years.

Even before the Raynaud’s study, I contributed tissue samples from my placenta after my younger daughter was born to researchers at the University of Pittsburgh. My hands have been photographed and written up in medical journals. For several years, I participated in Grand Rounds at BMC, to help educate young medical students about scleroderma. And I’ve served in a focus group to test intake forms for patients with scleroderma.

I’ve also given blood work for various studies over the years, though I draw the line when it comes to tissue samples from my hands. Given my history with ulcers and long healing times, I don’t want to aggravate my hands more than necessary, even for science.

Most recently, last week I received a call from the cardiology fellow who helped administer my right heart catheter stress test for pulmonary hypertension, to ask if I’d be interested in participating in a study of a non-invasive version of that test. The investigators want to know if a stress test that takes measurements using an MRI would be as accurate as the invasive version that I did. I said I’d be willing to do it, but in a few months. I just need a break from all the measuring. But I do want to help, especially if it means sparing others from the heart cath version, which, as I’ve written here, is no fun.

The other study I’m participating in currently is about cognition (related to aging, as opposed to scleroderma). This one involves playing a video game on an iPad at least once a month for a year. You have to do a variety of tasks that require you to navigate an obstacle course while capturing certain shapes. Conceptually, it’s straightforward, and I do okay. No decline, at least, in my scores. But the problem with the game itself is that it requires manual dexterity that I do not have. So it’s not really measuring my cognition as much as my ability to manipulate my fingers. I’ve mentioned this to the researchers, and they’re aware of the issue. But I’ll continue, anyway.

I write this not to pat myself on the back, but to encourage all of you who are able to take the time, to consider participating in scleroderma research. We’re a relatively small cohort, and whatever information researchers can glean from our experiences will help move us closer to a cure. It’s often easy, and the personal benefits—as I found with the Raynaud’s study— can be significant. If you are not being seen at a research center, as I am, you can find more about studies looking for participants on the Scleroderma Research Foundation website.

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: Bonnie Kittle

Backyard Ramble

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On Sunday I was feeling cranky. We needed to clean the house. I needed to get my Covid bivalent booster, but I didn’t have an appointment. Too much to do, not enough time.

Fortunately, my wise husband convinced me to get outside on a beautiful fall day to show me a new trail he’d discovered. Our Fair City has many hidden hiking trails that are a short drive from home, and he loves to explore them. This one was once home to a cider mill that has long since disappeared, but the field stone foundation remains, as well as two mill ponds and a stream that once powered the mill. The trail winds around the ponds and stream amidst oaks and maples and white pines and sassafras. Walking through the stunning fall foliage was just the antidote I needed, and I returned home refreshed. As for my booster shot, it can wait until Thursday. Hope you 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.

Reunion

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This past Saturday evening I found myself at an old-time, family-run Italian restaurant not far from where I grew up. Along with several dozen former high school classmates, we were celebrating that milestone event, our 50th reunion. But for the name tags with our senior class photos, most of us would never have recognized each other, now grayer, heavier or thin with wrinkles, stooped. Hellos were immediately followed by squinting at the name tags and an, “Oh, I remember you!” Or not.

None of my high school friends made it, unfortunately, but the evening was pleasant and the conversations up-beat. Everyone I sat with was wise enough to stay away from politics. It was a good reminder that, despite our national discourse feeling like a high school hellscape, most people are considerate adults. We all grew up a long time ago.

The real highlight of my short visit back home, however, was the ever-stunning beauty of the Hudson River Valley. Someone somewhere (I keep thinking it’s Edith Wharton, but can’t find the quote) said that the landscapes of our childhood remain deeply imprinted in our hearts and minds.

So it is for me, growing up near Peekskill, N.Y. I don’t know if I fully appreciated it when I was young, but I was thrilled by the view outside my room at the old motel where our grandparents used to stay when they’d come from Cincinnati to visit—a wide expanse of the Hudson, glittering in the late day sun. Trains that run alongside the river hooted long and low, and even though we lived far from the river itself, that sound was wonderfully evocative of my childhood, beloved music that drifted across hills and woods to my ears, especially at night, especially in summertime when the windows were open.

I sent a picture of the view to my daughters, and my eldest texted back that I should go to Bear Mountain, which had always been a favorite spot when we’d come down to New York for Thanksgiving weekend. On Sunday morning, I checked out of the motel and took her advice, as the state park was only a short drive across the river. The route along the Hudson is winding and narrow, along a rock cliff, and I am no fan of heights, but I just focused on the road ahead as I crossed the iconic Bear Mountain Bridge, with its fieldstone toll house, no longer in operation. It was either that or another fieldstone shelter at Bear Mountain that makes a cameo appearance at the beginning of Jack Kerouac’s On the Road.

Up the squiggly road to the overlook at the mountain’s top, I was followed by a couple of guys on motorcycles, but they were in no rush to overtake me on such a winding route with only large jagged rocks between us and the sharp dropoff. I passed a few intrepid cyclists on the way. At the top, the view did not disappoint, though enough other folks had decided to get there ahead of the weekend holiday crowd that there was no space to linger. I got a better view of the Hudson on my way back down, at a scenic overlook, alongside several tourists with real cameras equipped with telephoto lenses.

From Bear Mountain I drove through Peekskill, which, to my amazement, has barely changed since I was last there, at least 20 years ago. Some of the same mom and pop businesses still remain. The downtown, such as it is, remains dominated by red brick storefronts and the odd, curved, windowless, painted brick building that once housed Genung’s, the local department store where my mom bought me my first bra.

With a little help from my GPS to drive in the right direction out of town, I found my way to the familiar route to our old home. There were a few notable changes: the nunnery is now a condo complex; the community hospital where our mother was treated for the cancer that took her life in 1999 is now owned by New York Presbyterian Hospital.

I turned off the GPS and continued on, past houses that look much as they did when the school bus drove us by, past the decaying one room school house that’s now barely recognizable, past the gas station and general store where we’d walk sometimes to get Bazooka Bubblegum, past what was once a dude ranch for city folks that became a yeshivah while my dad was still living here, to the familiar left-hand turn onto our old road.

The house is barely visible now, hidden behind overgrown shrubbery, its yellow siding that my parents had installed decades ago now dark with mold. There were several cars in the drive and parked in the turnaround out front, so I quickly took a few photos, then drove down to the lake where I’d learned to swim and skate. It was clogged with algae and lily pads, no longer a place that anyone would dip a toe. Boaters were warned to proceed at their own risk. All that’s left of the large weeping willow that was planted when I was a kid is a ragged stump that looks like the remains of a lightening strike. There are weathered picnic tables and a playscape to one side, and the tennis court that used to be reserved for men only after they came home from their New York City train commutes, but the only signs of life, other than the aquatic, was a lot of Canada geese poop. Down the road from the path to the lake was a home with huge blue flags declaring the election victory of the former guy. It was time leave.

On my way out of town, I stopped at an roadside diner that used to be a favorite place for occasional dinners out. There are no longer any jukeboxes at the booths, and the restaurant has expanded well beyond its original blue diner car footprint, but the inside is authentic retro from back in the day, my hearty brunch was great, and it only cost twelve bucks.

Three-plus hours later, I walked in the door and found my husband decorating our pine-bough-covered sukkah, in preparation for the Jewish festival of Sukkot. Later that evening, after we’d finished eating out in the sukkah, I leaned back in my chair and studied the gourds that Al had hung from the lattice roof and smelled the pine boughs and was just grateful to be back home.

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.

New Tree, New Year

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Friday afternoon, we planted a new tree in our front yard. Ever since our city-owned Norway maple dropped a huge limb across the street this summer, I’ve wanted to make up for the loss. So we are now the proud parents of a persimmon sapling, which will (we hope) bear some tasty fruit in three to four years.

It seems a fitting way to begin the fall season—and a fitting way to mark the Jewish New Year, Rosh Hashanah, which began Sunday evening and continues until sundown tonight.

Planting a tree suggests many metaphors, for life, for abundance, for repairing our world. On a more personal level, I just happen to be a tree lover. The variety of species, alone, never ceases to amaze me or to remind me of the incredible diversity that makes our world so exquisite. Our persimmon has smooth, shiny green leaves that will turn a deep orange later in the season. When mature, it will reach ten to twelve feet in height and crown diameter.

Soon enough it will be whipped by wind and snow, but our landscaper, who specializes in sustainable, edible plantings that are appropriate for our region, assures me that it will sprout stronger roots in response to whatever fall and winter bring. So I will soak it twice a week and undoubtedly worry if the weather turns harsh and watch it adapt and grow.

It’s hard to believe that such a thin stalk will provide shade and food in a few years. But the act of planting a tree is an act of hope. And so, Dear Reader, whenever and however you mark the year’s turn, take heart. And consider planting your own tree.

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.