Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

As the Rain Approaches

· · Leave a Comment

The wind is blowing outside as I write on Monday afternoon. Yew boughs bounce and bend. A slight chill seeps through the floor of my converted-porch office. Beyond bay windows and walls, rushing air ebbs and flows with a whoosh and sigh, whoosh and sigh, like the sea, like a giant’s lungs.

The Earth breathes. I breathe. Every morning when I awake, I say a prayer of thanks that my lungs fill with ease. Each breath feels delicious, comforting, the most basic reassurance that I am alive and still healthy while mired in pandemic time. I meditate and follow my breath and observe how each inhalation and exhalation is so different and unique to that precise moment while at the same time so unremarkable as to be forgotten in the next.

Yews boughs bend and bounce. I watch for a cardinal or blue jay to brighten the branches that have turned gray-green in the pearly light of approaching rain. But they are wise to the weather, tucked into their nests or other hiding places to ride out the storm. Somewhere nearby, I can hear a bird singing, but don’t know enough to recognize the vocalist.

No bird answers. A car sweeps past. A siren wails in the distance. My ears ring with decades-old tinnitus that I usually ignore. It is a constant internal concert of rushing, high-pitched tintinnabulation on the right, countered by a deep, soft lowing on the left. It becomes more insistent in stillness, an irritant that I normally brush away with music or conversation or concentration.

On this pearl-gray afternoon, however, I don’t mind its reminder—that I am still here, sitting at my desk, pondering the next phrase, as the wind rushes outside, and the birds find refuge, and the rain approaches.

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: Mahkeo

Are We There, Yet?

· · 4 Comments

Yesterday I wrote to our Air BnB host that we were cancelling our June weekend trip to Block Island. I’d been looking forward to this family get-together for months at the perfect summer home in a remote part of our favorite place off the Rhode Island coast. But the state requires 14-day self-quarantine for travelers from out-of-state, the virus is still surging here in Massachusetts, and I cannot imagine that, even if restrictions are lifted in a month, it will really be safe to go there on the ferry.

Call me risk averse. I consider it an asset, these days. So far, as I write, I’m very grateful that our family remains healthy and safe in our respective homes. Others in our friendship circle are not so fortunate, which is both deeply concerning for their well-being and scary. I feel the virus encroaching and a need to be ever more vigilant.

Confinement, so necessary, is taking its toll. Some days it doesn’t bother me, and others, it feels like a blue funk that I can’t shake. Obviously, this is nothing compared to the terrible struggles others are facing, fighting the virus itself and the economic hardship it has wrought. But the feeling is still real, and, as Brené Brown points out in this episode of her thoughtful “Unlocking Us” podcast, denying your feelings because others are suffering more doesn’t really help anyone. Our capacity for empathy and supporting others is intricately linked to our capacity for self-care. So, I’m trying to give myself some space to feel what I’m feeling, without getting sucked into a black hole.

Connecting with family and friends certainly helps, but I am hitting my limit with Zoom get-togethers. I find them exhausting when there are a lot of people involved.  “Zoom fatigue” or “Zoom burnout” is real, a phenomenon triggered by the inability to read non-verbal cues on a video chat, as well as the need to be “on” for the whole call. I have used Zoom for years for business, and it’s a great tool that makes me feel closer to my clients. It saved our Passover seder and has enabled us to catch up with family long-distance. But I’m finding that I need to pace online group get-togethers so I don’t feel so drained. One-on-one is easier, and not an issue.

Getting outside whenever the weather is good is essential for me. We had another gorgeous weekend, and Al and I took advantage with another hike, this time to Purgatory Chasm State Reservation not far from home, so named because of its huge, tumbled boulders and rocky trails. I found the going tougher, and there were more hikers, so it was less relaxing. But it was still good to get out in the woods again (albeit necessary, now, to start checking for deer ticks).

Making stuff helps, too. I sewed three more masks on Sunday out of tea towels. Cleaning the house is a meditation, making order out of chaos. Keeping up with my German homework taps a completely different part of my brain and gives me a sense of accomplishment as I learn and remember more.

Most of all, however, what’s keeping me sane is writing. I finished the third draft of my novel last week (more rounds to go, but a milestone, nonetheless), and started a new short story. The act of writing completely transports me to a mental space where time dissolves, I’m  absorbed in my imagination and words, and I can call all the shots.

Real life is not so accommodating. “We’re all in this together” is beginning to wear thin, but is all the more true. I’m trying to do my part, even as I yearn for normal, whatever that will mean when we are truly able to resume work and socializing in person. And so I sit here and write to you, Dear Reader, and hope that you have found relief from your own cabin fever that is fulfilling, safe, and considerate of all those around you. We have a very long way to go and need all the resilience we can muster to get there.

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: Ryan McGuire

66

· · 6 Comments

Celebrating my birthday this past weekend, in the midst of a pandemic, was different, to say the least. Not only were we stuck at home, but also it snowed. In April. I cannot recall this ever happening. Cold, yes. Snow, no.

So, I said to Al, “Let’s build a snowman!” He was surprised, because I never suggest anything that could make my hands cold, but he was also an enthusiastic participant.

When I was a kid, I loved making snowmen. I would stay outside in our front yard, rolling each ball of snow, arranging and decorating, until I was frozen myself. Back then, I didn’t care. I have a dim memory of doing this late one afternoon, the snow tinted blue as darkness fell, mittened fingers totally numb, but still feeling joyful in the act of creating.

Of course, the snow has to be just the right consistency for construction purposes, and we were in luck. Big, fat, pasty flakes had fallen all morning, a few inches worth, the kind of wet snow that gloms together into heavy blobs when you scoop up a handful. We headed out the front door and got to work.

With a shovel, Al created a mound for the base. We slapped on more snow globs to round it out a bit, and then I rolled two very heavy balls for the middle and head (needed Al’s help to stack them). We added stones for eyes and buttons. I found a couple of twigs from a fallen tree branch (very windy last week) for arms. Al added what was left of our horseradish from Passover for a nose, and contributed an old baseball cap. Together, we secured the finishing touch—a green bandana for a face mask. And so, in about twenty minutes, “Covie” was complete.

As we worked, a few neighbors walked by with their dog and voiced their approval. I took Covie’s portrait on my phone and headed inside. My mittens were soaked, just like that day long ago, and my fingers icy, but it was worth it.

Other birthday activities included reading a novel, listening to an inspiring podcast, enjoying birthday greetings from friends and family, catching up with my sister on the phone. In the afternoon, we had a Zoom party with my daughters, complete with a cake baked by Al, and an online card game that kept us laughing for a couple of hours. In the evening, we marked the occasion by making contributions to a variety of non-profits that are helping during the pandemic. This felt good. We capped off the day watching a movie online.

Throughout, I was in an upbeat mood. (This was helped by not reading any news.) For a cooped-up birthday during the scariest experience of my 66 years, it was lovely, memorable, and a good lesson in how much each moment is shaped by how we decide to approach it.

Now, if only the pandemic could end as quickly as Covie melted . . .

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.

Order Out of Chaos

· · Leave a Comment

As the pandemic surge approaches, we have been preparing for Passover—a deep and bitter irony, given the role that the Ten Plagues play in the Exodus story, the Seder’s focal point. Over the weekend, I wrote a condensed version of the Passover narrative that we’ll share with family and friends across the country Wednesday night via Zoom, in place of our traditional festive gathering. Certainly not the same as being together, but making the best of the situation.

And so, we’ve been cleaning the house, Al and I. We had to pause our biweekly cleaning service, given the risks of sharing unwanted germs, and sent them a check to help tide them over. Al’s done the heavy work, and I’m in charge of dusting. So long as I’m very careful and wear cotton gloves, I can avoid damaging my fingers. But I’m slow, as a result, and we have a lot of tchatchkies.

Still, there is something about revisiting all those little statues and knickknacks, remembering where we got them and when, and arranging them exactly as I want. The house looks clean and orderly, more so than usual, because we’re the ones doing the work and paying attention to dust hiding in nooks and crannies. We finally put away all the books that had been cluttering the living room coffee table, leaving a manageable stack to be read. I shipped a box full of electronic cords, cables, CDs, and DVDs to a recycling center in Washington State that was still taking donations.

It feels good to get ready for the holiday, not the usual dreaded chore. Life is so strange right now, seemingly normal in some ways and totally upside down in others. Cleaning and organizing our home is one way to regain at least some sense of control, and keeping our religious traditions means that COVID-19 is not in charge of what we do. It’s also a wonderful way to connect with those we love, even if we can’t see them in person this year.

All this is all the more important as the number of cases here in Massachusetts increases exponentially. Our city is well prepared, and the Commonwealth is undertaking a first-in-the-nation initiative with the global NGO Partners in Health to track contacts of people who test positive for COVID-19, in an effort to detect infection hot spots and contain the virus. I find this reassuring.

And yet. A couple of weeks ago, when I took my walk around the neighborhood, I overheard folks chatting about someone who knew someone who got the virus when their kid came home from Spain. A few days later, I passed by a group discussing personal experience with having had it and gotten over it (fortunately for the couple, it sounded as if they’d had a mild case). Yesterday, on my walk, for the first time I saw an ambulance outside someone’s house. I haven’t heard sirens in the neighborhood, but I know that’s inevitable.

The weather as I write is sunny and mild. Forsythias are blooming, leaves on the trees are just barely visible, and miniature daffodils brighten our rock garden with a splash of gold. Pandemic or not, spring is here. For that, for every morning that I awake with an easy, deep breath and know my family and friends are well, I am grateful. I hope you are safe and well, too.

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.

Coping Mechanisms

· · 2 Comments

I hope this post finds you and your loved ones safe and well.

I’m grateful to report that the only inconvenience I’m experiencing at present is damp, chilly weather that has kept me from taking a walk over the weekend. This should be my greatest problem in a pandemic.

It even hailed for about ten minutes on Sunday night, pea- to marble-sized chunks of ice that flung out of the sky, hammering our kitchen skylights and bouncing on our deck. As a trained weather spotter, I dutifully reported in to the National Weather Service office in Taunton, Mass., and the guy who answered could even hear the racket over the phone.

Nature has been teaching us a lot of hard lessons lately about unpredictability, risk, and our precious, fragile lives. When I wake up in the morning and take a deep breath, I’m grateful that my lungs fill easily, painlessly; that my temperature is normal; that Al here at home and my adult daughters in their respective cities are all well.

But sleep does not always come easily or consistently. I woke too early Monday morning from some kind of dream about COVID-19, wondering why Prince Harry and Meghan would move to LA right now. Doesn’t Canada have a better health care system? (Of course, with their wealth, health care costs are not an issue.) Just one measure of how too much news is penetrating my brain.

So I have been trying to figure out a way to cope with this pandemic and fears about my family’s health, for the long haul. I cannot keep riding the anxiety roller coaster, one day feeling calm and absorbed in my work or other activities, the next, waking up to remember we’re still stuck in this unfolding horror story and imagining the worst.

It’s simply not good for my health. When I first developed scleroderma more than 35 years ago, I was coming off a divorce, anxious and stressed and depressed, pumping far too much adrenaline into my system for too long. I have no proof, but I believe that months of fight-or-flight response triggered the onset of my disease. Research indicates that my hunch is a good one.

So, here’s where I’m at, as the pandemic continues its inexorable spread:

I have a great writer’s imagination. It is not helping me right now. I have to trust that I will be able to deal with whatever COVID-19 dishes up for me and my family as best I can. I can’t anticipate it, because there is no way to know what may or may not happen. I’ve done my due diligence research about local resources and what first steps to take if one of us gets sick. I’m following our city’s response team briefings, as well as our governor’s, and reliable media resources. I listen to Dr. Fauci and am very grateful for his presence.

I need to go on a COVID-19 news/social media diet and restrict my reading, watching, and listening to certain times and time limits during the day. Still struggling with that one, but I find myself adjusting to the awareness that the numbers are just going to keep going up for a while. I can’t change the reality of our present crisis. I can only do my part to follow the public health guidelines. So staying informed is important, but the value-added of each additional report about the latest scary detail is not adding to my understanding or well being.

Meditation really helps me to calm down. So does writing. So does listening to my favorite music. So does visiting online with family and friends, or writing longer emails to people I haven’t seen in a while, or calling on the phone. Walks are a necessity, as long as the weather permits.

When I have time in the evenings, I’m removing old childhood photos from Herwitz family albums to be digitized, and musing about how little we know about how life will turn out. One of my favorites is a portrait my father took of me and my mother when I was about 15 months old. I’m staring into the camera with an annoyed glare, probably tired of the photo shoot, as my mother holds me in her lap. There’s a bandage on her finger from where I had bitten her—a story she loved to tell, to rib me.

I’m usually smiling in most of those childhood images. But in that one photo, there’s a feisty determination in my eyes that gives me encouragement. It’s a quality that has served me well in learning to live with scleroderma—with an emphasis on live. It’s as if I’m telling myself, across the decades, that I and my loved ones will find our way through this, too.

God-willing, we all will. Stay home, stay safe, and keep washing those hands.

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.