Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Unplugged

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img_2433I’m writing Sunday morning at the dining room table, snatching a few quiet minutes before I launch into mega-cooking mode. Rosh Hashanah starts this evening, we have family coming for dinner tonight and friends tomorrow. I’ve been spreading out the work over several days to manage my hands and feet and energy, but inevitably, there is a lot to do until the last minute, when our guests arrive.

Then I’m going to unplug. One of my resolutions for the Jewish New Year is to stay offline on the holidays and Shabbat. I have become totally addicted to political news during this crazy, horrible election season, and I need to take a break from all the stress. The past two weekends, I put away my iPhone from Friday sunset to Saturday sunset, and I feel SO MUCH BETTER.

The reality is this: Unless there is a true emergency (a tornado, a flash flood, a fire), you don’t miss anything that important by skipping the news cycle for a day. It is a true relief to spare yourself the bombardment of bombast, hysterical headlines, frenetic Facebook feed and ceaseless flash of ads and images. You begin to realize your time and attention are your own to own. Your shoulders relax and you can concentrate with greater focus on what’s truly important.

So, on to cooking and good company and contemplating what I have to be grateful for in this life and how I could do better by others. To those who celebrate, my best wishes for a sweet, fulfilling and peaceful New Year. And to those of you with different beliefs, I wish you a healthful, stress-free break, however you define it, from whatever may be weighing you down.

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.

Resilience

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Eight days after a bomb shook the Chelsea neighborhood of lower Manhattan, I am in NYC on a business trip, staying in a hotel just a few blocks from where the explosion rocked W 23rd Street. You would never know anything had happened.

I arrived here Sunday afternoon, to be fully rested for a long day of meetings on Monday. I was tired from the train ride, but I didn’t want to lose the day, sunny and clear, with a hint of fall in the air. So I took a long walk to visit to the new Whitney Museum and catch the last day of a powerful retrospective exhibit by photographer Danny Lyon. After a lovely dinner, I walked the High Line back up to 23rd and across 5th Avenue to the east side of Manhattan, passing the site of the explosion without even noticing anything unusual.

New Yorkers are hardy folk. It was incredibly reassuring, after all the horrible headlines, to see how life goes on as normal here. People were out walking their dogs, going on dates, hanging out with friends, taking selfies, eating in restaurants, smoking cigarettes, sitting on benches while immersed in deep conversations. Two men sang their hearts out, busking for the High Line crowd. I passed a man sleeping on the sidewalk. Next to his head, someone had placed a bottle of water and a fresh sandwich wrapped in cellophane.

I must have walked at least four miles, down to the museum and back. Any tension I felt when I set out in the afternoon had completely vanished by the time I returned to my room, a little after eight. There is much more to life than what is filtered through the news. So, come along with me and enjoy the view. . . .

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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.

Agility Test

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It’s getting harder and harder to keep a positive attitude these days. This past weekend’s bombings in NYC and New Jersey, the stabbing in Minnesota, the hateful, cynical rhetoric of this presidential election campaign—I’ve had more than my share of insomnia recently. One day last week I had trouble focusing on my work. I know I need to turn off the news, but I can’t seem to break away from it all. My fight or flight instincts are on overdrive—not a good state of mind, with real potential to impact my health.

img_2383So I was glad for a great diversion on Monday that gave some renewed perspective. I  took the day off from work to drive up to New Hampshire (even as I was listening to updates on the NYC bomber manhunt) for the Bearded Collie Club of America’s National Specialty Agility Trial. A good friend of mine has two beardies—bright, exuberant, long-haired dogs with herding instincts and personality plus—and she is seriously involved in championship competitions.

I’ve never been to a dog competition, let alone one in agility, which involves leading the beardie through a course of hurdles, fabric tunnels, bridges, obstacles and teeter-totters. The rules and scoring are complicated. Preparation requires hours and hours of practice and an ocean of patience. The dogs are very smart and clearly have minds of their own. While they can run with amazing speed and precision, they can also zoom around in circles, run off to the side of the arena to explore, sniff the judge standing in the middle of the course, jump up on hind legs in excitement and bark like crazy.

Such was my friend’s experience when she ran her dog, Mac, through his first event. Despite many perfect practice sessions in recent months, as well as past successes on the ladder to championship ranking, this morning Mac decided to create his own version of the course. He ran this way and that, refused to run the course in order, skipped some of the hurdles, all the while jumping and barking his commentary. A discouraging experience, to say the least.

Plenty of the other dogs did their own thing, too. “How do you get another creature to do what you want?” I mused. “When I figure that one out, I’ll let you know,” quipped my friend. Watching everyone else’s mishaps—even at the national championship level, these dogs are a challenge to control and can be quite comical—we had some good laughs, and she regained her sense of humor and perspective.

And, I’m happy to report, Mac redeemed himself. Later in the afternoon, he ran an event that involved jumping over a lot of hurdles, running over a teeter-totter and threading through a “weaving” obstacle (running back and forth through a row of poles, like a slalom, but on level ground) so perfectly that he took the blue ribbon.

Clearly, we agreed, he could do it if he wanted to. It was all a matter of focus and his emotional reaction to the situation at hand.

It’s no wonder that the dog-trainer relationship is such an intimate partnership. We have so much in common.

On my drive home, as I caught up with the latest political news, I thought about how the narrative we tell ourselves has such an impact on our ability to stay on track and handle life’s many hurdles and obstacles. It’s all so easy to fall prey to the doomsaying that dominates the news media. There are real, substantive reasons for concern and even worry about what’s happening and what will happen next. But the future, by definition, is always an unknown.

We can choose to believe the worst and let our fears run us in circles. Or we can choose to believe that whatever comes, we will confront it with focus, courage and commitment to stay the course of living a life true to our values and all we hold dear.

I’m going to do my best to remember that as Election Day 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.

 

Exposed

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For a couple of days recently, I was down to one bandaged digital ulcer—my right thumb, still healing from surgery in June. Every few years, especially when there’s been a long hot spell, this happens. I can actually see most of my fingertips, a bandage vacation.

hand-2It’s very nice while it lasts. I can get going in the morning much more quickly—a couple of minutes, instead of the usual 20, to care for my hands. But it feels very strange. The fingers that have been under wraps for months, sometimes for the entire year, are extremely sensitive to touch. My left thumb, in particular, has some nerve damage that becomes much more pronounced when it goes Full Monty. By the end of the day, it’s tingling almost constantly.

Even still, I’m amazed and glad to be able to take a break from the bandages. Careful as I am to keep my hands clean, they get grubby during the day. The bandages shred at the edges and the adhesive attracts dirt. (I only use fabric bandages, which breathe and remain fairly comfortable, despite daily wear and tear.) Plus, I can’t sense exactly what I’m touching. This is the most frustrating part.

But walking around with almost bare hands can have some unexpected consequences. On one of the days when my fingers were exposed, I bought some groceries. The young cashier asked with genuine sympathy, “What happened to your hands?” I gave my standard reply about ulcers (sometimes, it’s just too much to explain about scleroderma) and went on my way. Only later did I realize that she wasn’t inquiring about all the bandages—there was just one. She was commenting on my oddly stunted fingers, misshapen by resorption of bones in my fingertips. Usually, no one can see, because of all the dressings.

Scleroderma causes a myriad of hand distortions. The oddest visual aspect of the disease, in my case, is that I barely have any fingernails left. This is actually what the cashier was asking about—it looks as if the tips of my fingers have been chopped off.

A missed opportunity for a teachable moment about this disease, certainly. At the same time, however, talking about a personal, physical disability with a casual stranger is murky territory.

My hands are strikingly different. I’ve had this disease for so many decades that I don’t really blame someone from wondering about them. The cashier was not ridiculing me. She was concerned, merely articulating what most people who meet me for the first time may be thinking.

However, I also don’t always feel like having to explain why my hands look strange. My hands are my hands, they are the only hands I have, and they serve me well, despite all the struggles inherent to this disease. They are certainly a distinctive feature. Enough said.

All of this will be a moot point, soon. The weather changed over the weekend from sultry heat to cool breezes by Sunday evening. I’m back to three bandages, and as it gets colder, I’ll have more. My stubby fingertips (the middle fingers on both hands are the most damaged) will hide under wraps again for the better part of the year. Time to find my gloves and pull out the sweaters.

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.

Flights of Fancy

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What better way to mark the official end of summer this Labor Day than to surround yourself with butterflies? That’s what Emily and I decided to do Monday afternoon after a hectic weekend of social events that included hosting a large, agreeable dog for a young couple who were getting married, friends of Mindi, who was home for the festivities and a big move to a new apartment.

The fall transition is most certainly upon us. But inside The Butterfly Place in Westford, Mass., it was a precious ahhh moment. Enjoy, Dear Reader . . .

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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.