Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

mindfulness

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

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.

Stuff and Nonsense

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The older I get, the less stuff I want to own. Al and I have been married for 30 years, and we’ve lived in our current home for 16. When we moved here, we brought a lot of boxes with us that we have yet to unpack. Since then, we’ve acquired more stuff. When you have the space, you fill it.

closetBut a lot of that stuff is no longer needed, no longer functional or just plain in the way, collecting dust. The stuff in good condition that’s outlived its usefulness for us could be beneficial for someone else. And whatever can’t be repurposed or recycled just needs to be tossed.

So, fueled by our recent bedbug scare—a false alarm, thank goodness, but enough of a scare to make me realize it’s high time to declutter—Al and I devoted a day-and-a-half over Labor Day weekend to getting rid of stuff. We’re far from finished, but we made a good start.

My first goal was to purge my wardrobe. I targeted anything that no longer fits (time to stop deluding myself that I will someday be able to wear clothes from when I was 10 pounds thinner), that I haven’t worn in years or that I really don’t like but have held onto for sentimental reasons. I not only went through my closet, but also every drawer in my bureau and nightstand.

And I found a lot of stuff to give away: mom jeans, sweatshirts and T’s, a couple of favorite jackets that I’ve tired of, shoes that I’ve loved but can no longer wear because my feet are so sensitive, hats that once looked good on me but don’t now because my face has thinned with age and scleroderma. I parted with some scarves that had been my mother’s, which I’ve never seriously considered wearing, a good overcoat that dwarfs me, silk blouses I haven’t touched in years. I filled ten bags.

At the same time, I also found some clothes that I was happy to rediscover: some silk liners that will keep me warm this winter and my good dance sneakers, which I thought I had lost somehow. Now that I’ve been walking more and building up my endurance, I’m planning to give Zoomba another try, with the right shoes.

We also tackled some of the clutter in our basement. Al had the brilliant idea of bringing a big box of old looseleaf binders to a neighborhood youth center, where kids study for their high school equivalency diplomas. I went through the very stuffed top drawer (out of five) in my old filing cabinet and reduced the contents to about two inches of papers that I want to keep. (No, I really don’t need to save every single student paper I graded during my years as an adjunct writing instructor at Clark University in the 1980s.)

After all that sifting, sorting, tossing and bagging, we brought a carload over to Goodwill, including my clothes, some of Al’s, bags of wire dry-cleaner hangers, old purses and knapsacks, and other miscellaneous stuff. Al set out bags and boxes for recycling on the curb. It was all gone the next day.

There is still a lot to do. It’s a project that will take us well into the colder days of fall. But it feels so good to be down to what I really enjoy owning, rather than holding onto stuff just out of habit, laziness or misplaced sentiment, that I’m inspired to keep at it. It’s true. Less is more

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.

Letting Go

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School’s back in session, election season is upon us (here in Massachusetts it’s Primary Day for local government races) and Rosh Hashanah, the Jewish New Year, is just around the corner. It’s a season of new beginnings—and a time, for me, to take stock of where I’m at, where I’m heading and how I could do/live/be better in the coming year.

With that in mind, I share the following animated video, which I saw this past weekend at a program at our synagogue, in preparation for the High Holidays. It’s all about dealing with people who have hurt you one way or another. Well worth the ten minutes, and the theme is universal. Especially when living with chronic illness, we need to use our energy well and manage stress. I hope you find it as thought-provoking as I did.

Animation, story and voices by Hanan Harchol (in case, for some reason, you can’t see the embedded video below, you’ll find the link here):

P.S. For those of you who aren’t familiar with Yiddish, a schmendrick is a stupid person, a fool, a nincompoop.

More from Hanan Harchol can be found at jewishfoodforthought.com

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.