Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

body-mind balance

Darkness Into Light

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Just before midnight last night, the Earth reached the point in its annual orbit when the North Pole tilted the farthest distance away from our Sun—23.5 degrees, to be exact. For those of us in the Northern Hemisphere, that means today, December 22, brings the shortest day’s worth of daylight of the year. Starting tomorrow, daylight grows incrementally longer.

Tower HillI’m not alone in my feeling of relief every time we pass the Winter Solstice. People have celebrated the arrival of the “new sun” for millennia. Usually Hanukkah lands close enough to this day that, by the time we light the eighth candle, I feel like the long descent into darkness is over; this year, I had to wait another eight days, and it seemed like forever.

Of course, here in New England, just because the days are now officially getting longer doesn’t mean they will get warmer. Not by a long shot. Even though December has been exceptionally mild—heading toward the ‘60s on Christmas Day—come January, we will undoubtedly have colder weather. Last year’s mild December tricked everyone when we were socked with a brutally cold winter and more snow in Worcester than any other city in the country.

I write this, of course, because winter is just really hard on my Raynaud’s. I saw my rheumatologist last week, and we were joking that the only people who are happy about the warm weather here are people like me. Everyone else is wishing for some seasonal temperatures and at least enough snow to transform the landscape without making roads hazardous. Even the ski resorts can’t make snow because it’s just been too warm.

So far, the National Oceanic and Atmospheric Administration is predicting a milder winter in these parts. I have yet to have my snow tires put on my Prius. Usually I do this just after Thanksgiving. I know I should take care of this soon, before year’s end. But there’s been no incentive.

I’m not complaining. I am reveling in this weather for as long as it lasts. And I’m enjoying the psychological boost of knowing that there will be more daylight tomorrow, and the day after that, and the day after that.

Meanwhile, I’m looking for ways to brighten the darkness. Over the weekend, Al and I went to Tower Hill Botanic Garden to enjoy tropical plants in the Orangerie and Limonaia, the festive seasonal decorations, a performance of Renaissance and Baroque music celebrating the Winter Solstice and, best of all, the gardens illuminated at night by thousands of jewel-toned lights. I leave you with this view, to brighten your own dark nights as we await the return of longer days.

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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.

What Really Matters

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At some point in the blur of my Facebook feed this past week, someone posted a cartoon that resonated. Two women are walking down a sidewalk, commiserating. One says to the other, “I want to stay informed, but I also want to keep my sanity.”

OLYMPUS DIGITAL CAMERAThat is exactly how I’m feeling these days. I’ve had numerous conversations with friends about whether the news really is getting worse, or if we’re just hearing more bad news all the time because of social media.

It’s gotten to the point that I’ve had trouble falling asleep a few nights, overloaded by reports of terrorist attacks, backlash back home, predictions of how the U.S. electrical grid is vulnerable (Ted Koppel’s new book) and the hateful, xenophobic rhetoric of the GOP presidential campaign.

Not good for my health, or yours, or anyone’s. But how to strike the right balance? With so much at stake in this election year, I feel an obligation to keep on top of the news. But I really don’t need all the FB posts about the latest outrageous comments by Donald Trump.

I want to know what’s going on in the world, but there is only so much I can absorb about the latest terrorist attacks. Sadly, very sadly, some innocent people are killed every week, somewhere in the world, by terrorists. I’m struggling with this, but all the social media commentary and debate often do more to alarm than enlighten.

This past week, evil struck home with the death of an 18-year-old Massachusetts son, Ezra Schwartz, who was killed in a terror attack in Israel. He was an exemplary young men, and his death rocked the Jewish community here. My eldest attended his packed funeral on Sunday, because they shared the same summer camp. I woke up several mornings, thinking how his mother must be feeling. Heartbreaking. I can barely imagine what she is going through—and all the other mothers and fathers and sisters and brothers around the world who have lost loved ones to terror.

But at some point, I have to stop and just be here, in the present moment, grateful that I live on a safe, tree-lined street in a comfortable home. I need to focus on the gift of a loving, supportive husband and our two incredible daughters, each dedicating her career to helping others. I need to appreciate caring family and friends, a supportive community, my great consulting clients who enable me to work for myself successfully. I need to remember the blessing of an outstanding medical team that helps me to manage my scleroderma and stay as healthy as I am.

And I need to appreciate the fact that our country, with all of its serious problems, also protects freedom of speech—even if a lot of what I’m hearing these days is disturbing, to put it mildly. Staying informed is critical to our democratic process. I just don’t need to stay informed 24/7. Quality, not quantity of information is what really matters.

All that, and a sense of humor, and a good piece of dark chocolate are the only ways to stay sane.

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.

Image Credit: John Nyberg

Status Report

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Al and I were catching up with friends recently, all of us in our 60s, when the conversation inevitably turned to everyone’s health and the aches and pains that have become all too common with age. I listened, but didn’t say much.

DCF 1.0Then one friend, whom we haven’t seen in quite a few years, turned to me and asked about my health. He remembered when I was first diagnosed, decades ago, and how I had no idea at the time which way it would go.

I explained how scleroderma affects everyone uniquely, and that, although it was complicated, mine was the slow-moving variant. “You seem to be doing really well,” he said. “I’m glad for you.”

He was, of course, being thoughtful. I appreciated his reflection that I look well. But the whole exchange caught me off guard. It surprised me that he remembered those early years, which are now such a distant memory for me—and that this remained how he thought about me.

Even as I deal with my scleroderma every day and write this blog every week, it is not top-of-mind when I describe what’s going on in my life, nor are the details of my symptoms conversation-starters, especially with people I haven’t seen in a long time. It’s there, in the background, ever-present, a force to be reckoned with—but not what defines me. Not by a long shot.

Thirty years ago, when I first became aware that I was dealing with some form of autoimmune disease, it was different. I was terrified and very anxious about what was wrong with my body and the prognosis. I remember cornering friends who were physicians and picking their brains. I’m sure I talked about my health to anyone who would listen. There was so much to process, and the information available at the time was quite limited to the most dire of outcomes.

Within the first year or so, however, I began to pull back. No one outside the medical profession knew anything about the disease, and most of our friends, then in their thirties, were healthy and could not relate to what it meant to have a chronic illness. So I kept to myself. Al was the only person who really knew what I was going through. I sought support and insight from therapists. I commiserated with a couple of friends with their own chronic health challenges, who understood. In fact, over the next few decades, I barely spoke at all about my scleroderma in public.

When I decided to write this blog, nearly four years ago, I realized that I had become so circumspect that it was difficult even to say the word “scleroderma” to anyone other than family, medical professionals and a very few close friends. I felt so self-conscious and awkward about it that when someone inquired about all the bandages on my fingers, I would just mutter something about having chronic ulcers. But I realized that I needed to come to terms with my disease, and the best way for me to do that was to write about it and share the experience with fellow travelers.

After writing thousands of words on the subject, I’m finding that living with scleroderma is no longer a threatening concept or something that I’m embarrassed to mention in a conversation or ashamed to identify as a significant part of my world. Rather, my scleroderma is just there. It’s not the totality of who I am or how I want to be remembered. I wish it would go away, but it won’t. So after three-plus decades, I’ve come to accept it as a part of me and what has made me who I am today. That’s all. Nothing more, and nothing less.

This is my 200th post. To those of you who have followed since the beginning, and to those who are newcomers, I’m sure you’ve noticed that I don’t strictly stick to the specifics of scleroderma—for all the reasons cited here. Living with scleroderma is not just about the details of a complex disease; it’s also about living fully. That’s my personal goal, and that’s what I hope to reflect on here. Thanks for listening.

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.

Image Credit: José A. Warletta

A Walk in the Woods

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The leaves are turning later this autumn. Warm weather through September has delayed our annual New England spectacle. The sugar maples are just beginning to splash streets and forests with their glorious golds and oranges and crimsons. And the brightest leaves are just beginning to fall, as they must, as the flow of sap slows and the trees harden off for the winter ahead.

photoWith the trees’ annual cycle of endings have come losses for friends. Three have bid goodbye to parents in the past few weeks–aged 89 to 98. It’s been a time of cooking for shiva meals, joining in evening prayers, hearing stories of long lives, well lived. The last funeral was yesterday, October 12.

Yesterday would have been my mother’s 93rd birthday. She died 16 years ago. She always enjoyed the fall. As leader of our Girl Scout troop when I was in grade school, she took us on camping trips in the woods, where we would sleep in big canvas tents pitched over wooden platforms. I’m sure those adventures nurtured my love of walking in the forest, especially at the height of autumn.

I was thinking of her as Al and I hiked in a nearby state forest on Sunday. My joints began to ache and my legs were heavy by the time we emerged from the trails, but the view and the scent and the refreshing air were worth it. So, Mom, these pictures from our hike are for you. Rest in peace.

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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.

Moose Tracks

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Last Friday, a moose found its way to a street in our neighborhood, a few blocks from our house. It was clearly lost, an adolescent with only the beginnings of antlers, wandering past Colonials and Capes, trying to find its way back home.

(If you can’t see the embedded video, click here to see it on YouTube. Video by A. Stephenson, 10-2-15.)

I missed all the excitement, but apparently the moose caused quite a stir, galumphing across busy streets, passing near the campus of Worcester Polytech, and eventually disappearing somewhere into the woods. Police and animal protection services followed it all day without capturing it. The moose got away, but not before it made the evening news in Boston.

Friends were talking about it over the weekend, sharing a video of the wayward moose on YouTube. People interviewed on the TV report smiled with excitement at the idea of seeing a moose strolling through the city. For a brief moment, we all forgot our adult worries and cares. Just the notion of a moose on the loose—harmless enough as long as it didn’t cause any property damage or car accidents—turned us all into little kids.

Somehow this seemed a fitting end to a week that began with a lunar eclipse. Viewing conditions were perfect here the previous Sunday, as we stood outside with friends and watched the moon transition from a brilliant spotlight in the dark night sky to a copper penny. As we gazed skyward, we sang Moon River and Shine on Harvest Moon and Moon Over Miami—every moon song we could remember.

A sense of wonder is a powerful antidote to all the sad, bad, upsetting news in the world. There is always more than enough to worry about—another school shooting, extreme weather, wars, disfunctional politics—and, closer to home, the day-to-day pressures of work and challenges of managing my health.

Then there is the big annual adjustment to fall. Cold, rainy weather this past week dampened my mood. Back to sweaters and leg warmers and layers, wool coats and hats. I turned on the heat pumps for the first time in months and made oatmeal for breakfast. I tried not to think about the winter ahead.

So it was refreshing, once the rain finally ended, to go out for a walk and retrace part of the path that the moose had followed, which is along my normal route. No signs of the recent visitor, but the maples are beginning to turn the color of a lunar eclipse. Acorns and small red crabapples carpet the sidewalks and streets. I noticed a squirrel digging in a flowerpot on a porch, as a dog inside barked madly. It made me laugh. I’m not sure why. Something about the innocence of it all—squirrel taunts dog, dog gets upset, squirrel ignores it and keep doing its thing.

A moose wanders down a quiet city street, looking for home. No one shoots it, except with a video camera. No one captures it. It dodges traffic and disappears into the woods, without a trace.

I wish I’d been there to see it pass by.

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.