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Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

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mindfulness

Around the Block

Evelyn Herwitz · November 11, 2014 · 9 Comments

I’m not yet used to earlier sunsets. It always takes me a few weeks to adjust when we turn back the clocks for standard time. On Friday afternoon, I was running around, trying to finish errands before sundown, which heralds our Shabbat observance, and just made it home as dusk settled. Whew.

Back to my desk on Monday, I lost track again, this time because I was immersed in my writing, only to realize it was nearly 4 o’clock in the afternoon and I had not yet walked Ginger. I should have taken her out when it was brighter and warmer after lunch, but she needed the exercise. I did, too.

So, despite the darkening, chilly fall afternoon (for me—others I passed were in fleece vests or zip-up jackets), I donned my down winter coat and a hat, clipped Ginger’s leash to her collar and headed out the door.

A lungful of fresh air immediately helped to clear my brain, woolly with words. Ginger paused by the huge pile of dried leaves in front of our curb to explore the many and varied, fascinating scents. Our walks take longer this time of year, until all the leaves have fallen and city streets are swept clean. I have to urge her to keep walking so my hands don’t go numb.

“That dog is amazing,” commented our neighbor, walking her puffy little pooch in the opposite direction. Our white-faced golden is 16, but still can pull me down the street if she has a mind to. My neighbor’s dog decided to lie down in the street and watch us, but Ginger, whose nose is better than her ears and eyes, ignored it and kept on snuffling, leading me slowly forward.

Around the corner, two boys in shirtsleeves shot hoops in a driveway. Everything glowed with a deep orange patina—the piles of rakings along either side of the street, the Norway maples that still clung to a few golden leaves, Ginger’s fur, the errant basketball that rolled across our path. “How are you?” asked the boy as he ran to retrieve it. We exchanged pleasantries, and he loped back to his game.

A friend wisely observed over the weekend that all the frightening headlines (Ebola! ISIS! Washington Gridlock! Climate Change!) that describe a world in seeming collapse don’t really square with everyday experience. Most people are good. Many strangers can be trusted. A 12-year-old boy can be polite to a woman walking her old dog around the block.

As we rounded the next corner and headed up a slight hill, the sky turned salmon and violet. For a few astounding seconds, the trees and leaves seemed infused with an etherial, rose light. If I hadn’t left the house with Ginger at the exact, too-late moment, kicking myself for forgetting about the time change, I would have missed it.

Home again, dark settling in, I rubbed Ginger’s ears and thanked her for inspiring me to get out of the house. Sometimes the best part of the day is the part you wanted to avoid.

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: mindfulness, Raynaud's, resilience

Enter Autumn

Evelyn Herwitz · September 2, 2014 · 2 Comments

The other day, as I was walking Ginger around the block, I heard a flock of Canada Geese honking overhead. I never saw them, but I envisioned them flying in V-formation, heading south.

August is over. I’m writing on the first day of September. Even though summer doesn’t officially end until later this month, Labor Day is always my turning point from the comfort of warm, long days of sunlight into the prospect of cooler, darker, busy fall.

Black-eyed Susans 9-1-14Sugar maple leaves are the first harbinger, speckling the sides of our street for the past few weeks with splashes of gold and tangerine. As the days grow shorter, the trees begin their annual rite of passage, hardening for winter. Today seems odd—it’s muggy, hot and very sunny. But the trees know better, what’s coming.

As I write, Emily and Al are packing a friend’s truck for the drive out to her new apartment. Grad school starts this week, both for her, as a first year master’s student, and for Mindi, entering her second and final year of her professional degree program. Closer to home, public schools began last week. Time, once again, to remember to avoid leaving the house mid-afternoon when school buses from nearby schools travel their routes.

I’ve spent much of my Labor Day weekend sewing. I’m nearly done with a new dress. But, of course, it’s a summery dress, not a fall outfit. For some reason, I am never able to sew ahead of the season. I bought the pattern in July. I’ve had the fabric, a beautiful fuchsia knit, for at least five years, purchased another summer with a different dress in mind.

Two weekends ago, I finally altered the pattern and cut out the pieces. I started sewing in the evenings, until our house was full with family, and I had to clear off the dining room table. So I dug in again yesterday, because I finally had time, and because I didn’t want the dress to wait another full year. I may still get some use out of it before the weather consistently cools off.

I am a slow sewer. I have to pace myself because of my hands, and I can’t manage the fabric as well as I once could, which is why I don’t sew often. Picking out seams when I mess up, which is more often than I’d like, is tricky and tedious. I’m more willing to live with mistakes that no one else will notice, given my limitations. The end result is still good enough, albeit not the perfection I’d prefer.

I would like to sew more. My favorite sewing magazine is full of luscious fall fabrics in autumnal hues. The dress pattern I’m using comes from a designer who creates lovely, easy-to-construct clothes. I hate shopping for ready-to-wear, and sewing is the perfect antidote—not only a way to create unique clothes that actually fit, but also a great meditation. Nonetheless, I have to respect my hands. And my energy. And the number of hours in the day.

Ahead lies a solid lineup of work and creative projects to take me well into the fall. Much as I love the summer months, it’s easier to concentrate as the weather cools and everyone else is back to work or school. The trees may shed their leaves and the geese fly south, the weather will inevitably make me long for warmer days and fewer layers, but I’m looking forward to the crisp crackle of new beginnings.

I just need to sew up that wonderful warm fabric I wove last winter into a jacket, before the days grow long again.

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.

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Filed Under: Body, Hearing, Mind, Sight, Touch Tagged With: hands, mindfulness, sewing

One More Thing

Evelyn Herwitz · August 5, 2014 · Leave a Comment

As my family well knows, I have a bad habit of trying to squeeze in as many items on my to-do list as possible before I head out the door. I get a lot done, but all too often I run late—not horribly late, and I manage to make most appointments on time, but when the deadline is less rigid, I can slide five, ten minutes behind.

The problem is that everything usually works out fine, anyway, which just reinforces my obsession with getting that One More Thing done.

Except for Monday morning, when I had to catch a train to Boston to catch the bus to Logan for a flight to Kansas City on business. (Fortunately, this has a happy ending, but this once again reinforces my bad habit, as you’ll see.)

I was well organized for my trip when I got up, relatively on time (mornings are always hard, as my body is sluggish). My bag was 99 percent packed. Did my exercises. So far, so good. Stopped myself from catching up on news and Facebook, so I wouldn’t waste precious minutes.

Then came the fateful decision to do One More Thing. I had a family project I wanted to finish before leaving the house, which I needed to complete online from our secure network, that I felt couldn’t wait until my return from my business trip later this week. It took about 15 minutes. I had just barely enough time to eat breakfast, finish packing, get dressed and race out the door with Al to get to the train station.

Challenging under even the best of circumstances. But I was also upset with myself, because in the midst of finishing my One More Thing project, I thought I’d messed up the online form because I was rushing and couldn’t backtrack. As I finished shoving the last few items into my suitcase, my hands started shaking. This always happens when I hurry and get stressed. Totally involuntary and very frustrating—my coordination just gets worse.

So I ranted to Al all the way to the train. Fortunately, he is very calm when I freak out. As we drove up to the station, I could see the train waiting at the platform. I jumped out of the car, Al grabbed my bag from the trunk, we said a quick goodbye, and I ran as best I could toward the platform . . . only to watch the train pull away. As one of the conductors, standing on a coach staircase, slid by me, he shook his head and shrugged. Just another late, would-be passenger.

At this point, I started crying. There are many things in this world worth crying about, and this wasn’t one of them, but I was just so frustrated with myself. Al to the rescue (fortunately, he had waited to be sure I got on) with a big hug. Rather than go home and come back in two hours to catch the next train, which would have risked a tight rush to the airport, he drove me in to Logan.

Now, here’s where my One More Thing habit gets reinforced. The ride into town had the advantage of saving my hands from dragging my carry-on from train through South Station to bus to airport. We said a real good-bye when Al dropped me off. I made it through security in 10 minutes, bought a bagel and found a table where I could write before every space was taken later in the morning. And, to top it off, I found out through an email exchange about my One More Thing project that I’d completed the online form correctly, after all. No problem!

Next time I miss a train because I’m trying to do too much, I still hope my loving husband will take pity on me once again and save the day. But I honestly don’t want to cut it so close to the wire, for myself (too much stress) or for him. (Hear that, Al? Thanks again! Love you!)

It’s comforting to know that life usually works out, even when you think you’ve messed up. But it’s also good to remember that One More Thing can usually wait. (Hear that, me?)

Photo Credit: Éole via Compfight cc

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.

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Filed Under: Body, Mind, Sight, Touch Tagged With: hands, life style, managing chronic disease, mindfulness, time management, travel

State of Mind

Evelyn Herwitz · July 22, 2014 · Leave a Comment

It’s finally here, a week when Al and I kick back and take advantage of all that New England has to offer in the summer, beautiful and fascinating places that other people travel miles and miles to visit, but just happen to be within a few hours’ drive of our home.

We got into summer day-tripping a few years ago to economize, and now it’s become a highlight of the year. We started off on Sunday with an afternoon in Boston’s South End, browsing stores and artist lofts and outdoor booths filled with all kinds of crafts, a massive indoor vintage market (read, upscale term for flea market), plus a farmer’s market.

Strawberry Banke 7-21-14On Monday, we drove up to Portsmouth, N.H., to Strawbery Banke, a living history museum covering four centuries of life in one of that city’s oldest communities. Period homes are surrounded by heritage gardens, including one with a children’s tea party set amidst fanciful fairy houses.

I wouldn’t mind living there for a while. In the fairy garden, I mean.

Even as I’m enjoying the break from routine, the glorious weather so far and discovering regional treasures, I’m having some trouble separating out from what else is going on in the world. When you leave your home for a period of days or weeks, it’s easier to take a complete mental break. This is essential to recharging and relaxing, so critical to maintaining health and well-being.

But I can’t seem to tear myself away from following news in the Middle East. Trying to set a limit, but I feel compelled to keep up, even as I find the developments so stressful. Too much is at stake.

So I was grateful to find an oasis of peace right here in our hometown Sunday night. A few years ago, Al and I decided to initiate an interfaith dialogue between our synagogue and a local mosque. Since that time, members of both our communities have studied texts together, broken bread and come to understand how much our faith traditions have in common.

Weeks before the most recent hostilities broke out between Israel and Hamas, our friends at the mosque had invited us to join them for a Ramadan break-fast. And so, this past Sunday evening, a group of our congregants and our rabbi went to the mosque and shared in a study session about the meaning of the Ramadan fast. We explained fasting in our Jewish tradition. We asked questions. And we learned, once again, how much we have in common.

What made the deepest impression on me, as I listened, was how both Ramadan and Yom Kippur are intended for introspection, self-improvement, mending relationships, bringing goodness into the world and drawing closer to God. Both faith traditions are deeply committed to peace.

I will carry that awareness with me as I follow the news and pray that the best in both sides will prevail. And I’ll try to create my own inner space of peace, appreciating what is good and beautiful all around me, as I take a break from headlines, deadlines and most of my responsibilities for a week. The alternative is to wear myself out, and that won’t do anyone any good, especially me.

After all, vacation, no matter where you are or how you do it, is really only a state of mind.

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.

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Filed Under: Body, Hearing, Mind, Sight, Taste Tagged With: body-mind balance, mindfulness, resilience, vacation

Violet Thread

Evelyn Herwitz · June 24, 2014 · Leave a Comment

Just three bandaged fingers. That’s all. Pretty good for June, before the weather gets really hot. And only one fingertip has a persistent ulcer that’s taken months to begin closing. The other two, my thumbs, need extra protection for sensitive skin that I hope will heal as temperatures finally rise here in New England.

I’m sure I’ll be griping along with the rest of my neighbors when we hit the inevitable mid-summer muggy heat wave. But for now, the prospect of 80 degree temps this week sounds grand.

My gums are also healing from last month’s emergency tooth extraction, the tissues filling in over the bone graft where my resorbing, sore molar once resided. In a couple more months, it will be time for the implant. By Thanksgiving, I hope to have all my teeth again. And, hopefully, sometime between now and then, our dental insurance plan will find the paperwork from the periodontist’s office that justifies the bone graft as preparation for an implant, instead of informing us that it was not “dentally necessary” and refusing to send a reimbursement.

I’ve been sewing, too, mending clothes for my eldest, Mindi, before she left last week for Israel. I patched a favorite pair of jeans, even found matching fabric from a similar pair that belonged to her sister, after Em trimmed hers for summer cut-offs. With a few daubs of superglue, I mended a broken purse-strap. Next on the list: restitching a waistband. I just need to pick up the right shade of violet thread, which gives me a good excuse to go to the fabric store and peruse the sewing catalogues.

As I write on Sunday morning, Al is out back, clearing brush, weeding, puttering in the yard. I spoke to our arborist on Friday about tree maintenance, and we now have a pruning estimate for the overgrown Bradford pear, Japanese maple, Norway maple and yews, plus an environmentally friendly solution for the plant bugs (yup, that’s what they’re called) that have infested our boxwood hedges.

Halfway across the world, as Mindi co-leads a group on a whirlwind Israel tour, things are not as calm. A few days before she left, three Israeli teens were kidnapped by terrorists while hiking in the West Bank; tensions are mounting as Israeli forces search for the missing boys, arresting hundreds of Palestinian suspects. The leader of the Palestinian Authority has condemned the kidnappings and vowed cooperation. But retaliatory rockets were fired from Gaza into southern Israel over the weekend, not far from where her tour group was supposed to spend Shabbat, and intercepted. A few Palestinians have died; the IDF asserts self-defense. This will get worse before it gets resolved.

Mindi comes back to the States in early July. Meanwhile, Iraq is erupting in bloody sectarian civil war. I asked a friend who is a veteran of Iraq, Afghanistan and Vietnam for his assessment. The Iraqi government is totally corrupt, he says. Not even their own troops want to fight for them. I watch news reports and feel sorrow for the innocent citizens trapped in the middle and grateful that our country, for all its serious problems, is relatively peaceful and secure.

I am trying not to let all of this news make me crazy while Mindi is so near the action. We’ve been through tense times before when she lived in Tel Aviv during the rocket attacks in 2012. Life is never without risks. I remind myself that the odds of serious injury or worse are greater whenever I drive on the Mass Pike than when my adventurous daughter travels abroad.

And so, I focus on repairing what’s within my control. I tend my finger ulcers. I follow my periodontist’s directions to care for my healing gums. I plan a pruning schedule for overgrown trees. And I pull out my sewing machine and go to the fabric store for violet thread.

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.

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Filed Under: Body, Hearing, Mind, Sight Tagged With: body-mind balance, finger ulcers, mindfulness, resilience, stress management

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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