body-mind balance

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.

#19

Evelyn Herwitz · May 13, 2014 · Leave a Comment

Friday afternoon, Greenwich Village. Al and I squeeze into two remaining back row seats of a tiny, darkened theatre at the IFC Center just as the previews end. The acclaimed documentary is Manakamana, a mesmerizing character study of pilgrims traveling to and from a Hindu temple in Nepal via cable car. This is first on my list of things to do on our big weekend celebration of my 60th birthday and Mother’s Day. I’ve been looking forward to this trip for weeks. And I have a toothache.

I have a rare complication of scleroderma: The roots of some of my teeth are resorbing. So far, I’ve had a couple of back molars extracted and a front molar replaced with an implant. My dentist and periodontist have been monitoring the relentless deterioration of several other molars, since. The worst one, lower left, has been hanging on for five years, occasionally oversensitive to cold, but manageable. If it had a name, it would be Grumpy. But it only has a number, 19.

A few days before our trip, 19 was acting up. I assumed it would calm down with careful tending, per usual. But as we drove closer to NYC Friday afternoon, the twinges were becoming more persistent. I tried to ignore it.

A couple sits shoulder to shoulder in the cable car. He wears a traditional peaked cap, shirt and vest, and carries a live rooster. She wears a red blouse and necklace of green beads. Her face is shriveled. She leans with her arm over the back of the seat, exhausted. He checks his watch. As the car rides higher and higher above terraced corn fields and sal forests, she brightens. It’s fun to go to the temple, she says. It’s good to go out when you can.

As we leave the theatre, I realize that not only is 19 aching, but the pain is also traveling into my left ear. I can’t believe this is happening. I’ve come prepared with my pharmacopia of meds, but I don’t want to deal with a rotten tooth on my birthday weekend. It’s drizzling. We sit on a bench outside a bakery to sort out options. I don’t want to ruin everything we have planned, and I certainly don’t want to waste time in an ER or try to find a dentist who may not take our insurance. So we agree that I’ll try to manage the pain with my meds, wait and see.

Later that night, after a great meal (despite 19) of wine and risotto, enhanced by Al’s magical ability to find interesting people (across from the cafe, at an artist’s opening in a church gallery, we shared Shabbat candle lighting and kiddush), I lay awake, unable to sleep in strange surroundings. My mind travels back to the film.

Three young long-haired men, all dressed in black, joke and fiddle with their digital cameras and cellphones as the cable car travels up to the temple. It feels like we’re going up steps, says the one in the middle. My ears keep popping. They pose for each other’s selfies and play with a scrawny kitten. People ski on hills like this in other countries, says another. What if the cable broke and we fell, laughs the third.

Despite a fitful night, I get just enough sleep to go ahead with our plans for the day. So far, 19 is achey but manageable. It’s warm and the sun is shining. We attend Shabbat services at B’nai Jeshurun on the Upper West Side, then take a long stroll through Central Park, watch turtles sunning by a pond and wander through the Shakespeare Garden. I lie down on a bench while Al explores. People row on the lake, others play softball. Horse-drawn carriages clop along the road. The skies open up and we take refuge in the Museum of Modern Art–Al’s first-ever visit. I’m weary but elated to view these stunning works once again and watch Al’s enthusiastic response.

It’s still raining when MoMA closes, but we find a great restaurant right next to the Broadway theatre that is our final stop for the evening. I’m revived by the meal and we finish just in time to pick up our tickets for After Midnight, a revue of Cotton Club jazz from the ‘30s, starring Vanessa Williams. The music, singing, tap dancing, costumes are spectacular. Even from the very last row of the rear mezzanine, we can see everything perfectly. Exhausted, I sleep through the night, grateful that 19 has not gained the upper hand.

Three women sit in the cable car, dressed in bright colors and beads, their hair white, their faces gnarled like the bark of ancient trees. They talk about how their husband couldn’t come because he twisted his ankle while carrying a bucket of water he had drawn. They nod and look out the glass windows of the cable car, admiring the view. Life is so much easier than it used to be, one says. We had to struggle to survive.

Sunday is warm, beautiful. We enjoy a hearty breakfast in a little cafe, a stroll to the East River, and then head to the Brooklyn Botanical Garden for a glorious walk beneath blossoming cherry trees. Next door, at the Brooklyn Museum, we immerse in the works of dissident Chinese artist Ai Weiwei and so much more. I make sure to take my pain meds on time, to keep 19 in check. We reluctantly depart for home when the Museum closes its doors at six.

On Monday, I call my dentist and get a late afternoon appointment. The x-ray tells the story: There is a round gray shadow over the molar’s left-branching nerve. The resorption has exposed it. Nineteen has to go. It will take six to nine months after the extraction to complete the implant. Not surprised, I accept the bad news reluctantly, rub my achey jaw and drive home. At least the procedure will get split between this year’s remaining dental insurance and the next.

Two men sit in the cable car, each holding a stringed instrument and a bow. The older one looks out the window and recalls walking over the hills below to get to the temple, before there were even paths. We should tune up, he says to his younger companion. As the cable car descends, they watch treetops pass while playing a rhythmic folk melody, round and round and round.

Six-Oh!

Evelyn Herwitz · April 22, 2014 · 2 Comments

It’s official. I’m now in my seventh decade. Last Friday was my birthday, the big 6-0.

I’ve actually been looking forward to this milestone. First of all, 60 doesn’t seem nearly as old as it once did. Funny how that works—when you finally get here, the view is longer, deeper, more nuanced, not the caricature of feebleness that I envisioned when I was young. (Of course, my twenty-something daughters have had a field day, teasing me about senior moments. Mostly, I’ve laughed.)

Second of all, 60 feels like an accomplishment. I’ve been living with scleroderma for more than half my years, now. It is certainly wearing, exhausting and painful at times, frustrating, angering to feel gradually more limited in how much I can do with my hands or accomplish in a day. Each year brings new medical challenges.

But I’ve beat the odds on longevity and developed strong coping skills and plenty of resilience. I may have achieved this, anyway, with age, but I believe this complex disease has also taught me a lot about patience and persistence that I might not have learned otherwise. For a 60-year-old with scleroderma, I’m doing damn well, thank you very much, and I intend to do my best to keep it that way, whatever this disease throws my way.

So, I was looking forward to a celebratory day off on Friday, devoted to art—my own fiction writing and a trip to the Worcester Art Museum.

My body, however, had other ideas. Thursday afternoon, on my way home from a routine check-up with my Boston Medical rheumatologist, my joints began aching and I was flashing hot and cold in the car. My stomach had been irritated all day, from, I assumed, too much matzo for Passover.

I ascribed the joint pain to skipping my Ibuprofen due to the irritated stomach. After a light meal, I felt a bit better. That is, until evening, when I was dozing on the couch and suddenly felt like I was going to pass out. Thankfully, Al was home to help.

And that is why I spent my birthday flat on my back, sipping only water, trying to let my GI tract heal from what was by then, obviously, a virus. This was not the day I had planned.

I was determined, however, not to let a most unwelcome stomach virus ruin everything. So I wrote on my laptop and finished revising a short story that had been languishing for more than a year. That, plus greetings and gifts from family and friends, two beautiful hydrangeas that Al had brought home the night before and a cuddly stuffed turtle that he gave me that evening (nothing like being babied when you’re feeling crummy) helped to salvage the day.

I’m writing on Sunday, sitting at my desk again, able to eat very bland foods, looking forward to joining a group of good friends for dinner tonight as we begin the last two days of the Passover holiday. The art museum is closed for Easter Sunday, so I’ll postpone that visit a bit longer, keep it as something to look forward to. In May, Al and I will celebrate my birthday with a weekend in Manhattan.

Much as I wish it had all gone differently, somehow, it seems, this is what 60 is all about—taking the imperfections in stride, making the most of each day, whatever your state of health, appreciating the love of family and friends. And, for me, making art. Time to get over the fear-of-rejection hurdle and start sending out those short stories for publication.

Jet Lag

Evelyn Herwitz · April 1, 2014 · Leave a Comment

Nothing like travel to broaden your horizons and challenge your equanimity.

Glad to be back home from an excellent business trip to Chicago last week. Great meetings with a wonderful client, much learned, and a fascinating project ahead. In the process, I caught up with old friends not seen in decades, ate some fine meals and visited the magnificent Art Institute of Chicago.

All my preparations for carry-on luggage paid off, and I even lucked out twice with the fast lane TSA check-in, so I didn’t have to remove shoes, pull out my 3-1-1 bag or my computer when I went through security.

But, of course, there were complications. Miraculously, I did not get an infection in any of my finger ulcers. Instead, despite all my best efforts at hand hygiene, I woke up Wednesday morning with conjunctivitis in my right eye. I have not had this since my daughters were young. I couldn’t believe it. Conjunctivitis. Really?

Fortunately, a physician on my client’s leadership team was able to prescribe eye drops, saving me a major hassle and a visit to the ER. My eyes are still healing five days later, but the business trip was saved.

Then came the trip home.

Friday morning, I arrived at O’Hare with plenty of time to eat breakfast, find my gate and relax before departure. Our United Airlines jet arrived 15 minutes before our scheduled Noon departure, so our boarding was slightly delayed, but I wasn’t too concerned, since it was a non-stop flight.

The plane was too small for most people’s carry-on bags, so I and others were given green tags to load out bags onto the plane and receive them at the gate in Boston. However, I failed to realize that I should have taken the perforated stub off the tag, in case I had issues with claiming my bag. I will not make this mistake again.

We settled into our seats. I noticed the leather was worn and wondered about the age of the plane. This proved prescient.

At least 20 minutes passed. The pilot announced that we had an issue with auxiliary power, they were dealing with it, and we’d be on our way shortly. I tried not to worry. A few more minutes passed, and the plane pulled away from the gate.

We began to taxi out to the runway. Then we stopped. For a long time. I heard the engines revving and some odd noises. Then silence. Then the engines revved again. Then silence. Finally the pilot got on the loud speaker once again. This time, he informed us, there was an issue with the heat pump for the left engine. We had to head back to the gate for a mechanical check-up

So back we taxied. Another wait, this time for an open gate and a ground crew to guide us in. “They weren’t expecting us,” the pilot explained. I guess not. My seat mate and I began to crack jokes about what else could go wrong, like a sudden severe thunderstorm. We discovered a shared concern for climate change and a love of Jon Stewart.

At first, the flight crew wanted to keep us on the plane. But the engine problem was apparently more complicated than expected. So after another half hour or so, they decided to let us off the plane while the mechanics took a closer look. “Please stay near the gate for any updates,” the crew told us.

Now, that’s all fine and good, but several problems became immediately apparent. For one thing, I could not take my wonderful carry-on bag off the plane because it was in the cargo section, and I had not taken the stub from my green tag. So there was no option to get on another flight without getting my bag back.

For another, the staff at the gate had no information about alternative flights. “You can go talk to Customer Service,” we were told. Only one issue—we were at Gate B22, at the far end of the United Airlines terminal, and Customer Service was literally about a half-mile walk away.

So, how does one stay at the gate for updates and simultaneously find out about flight alternatives without cloning oneself? (I had tried unsuccessfully to download the United app.) As I pondered this, I decided to make a trip to the ladies room. While turning around to pick up my purse in the stall, I missed a metal shelf sticking out from the wall. Wham! Banged my forehead. It hurt. In fact, it hurt so much that I wondered if I’d just given myself a mild concussion. In the bathroom mirror, I saw a fat goose-egg on my forehead, with a throbbing vein in the middle, though no blood.

At this point, I almost lost it. How was I ever going to get home? What if I really had a concussion? I needed ice. Trying to slow my breathing, I spent a ridiculous amount of money for a chilled bottle of water, which I then pressed to my forehead as I sat at the crowded gate, feeling conspicuous. Though, of course, everyone was too absorbed in their own travel woes or cell phones to notice or care.

Nothing to do but wait it out, I decided. This was going to be a long trip home, but I’d get there, eventually.

Next announcement: There would be an update at 2:00 p.m. Enough time to find Customer Service. Long walk, more waiting. While in line, I recognized a fellow passenger and commiserated. She, it turned out, was on her way to be a bridesmaid in a childhood friend’s wedding in Cambridge at 7:00 p.m. Her dress was in her carry-on, which, like mine, had been green-tagged. As we sorted out our alternatives with the customer service reps, we learned that our flight was going to be switched to a new plane. Hurray! Hope springs eternal.

Back at B22, we soon boarded our new and improved plane. Where it came from, we did not know, but the seats looked newer, a good sign. All our luggage was switched, everyone was accounted for, and we all fastened our seat belts, By now, it was about 2:30 p.m., two-and-a-half hours after we were supposed to leave. A reasonable person would expect to taxi out right away. But there was one hitch: The plane needed fuel.

So we waited some more. I learned a lot about my seat mate’s law firm and some fascinating cases. She was still hoping to meet a friend in Boston and ride out to Northampton for a 7:00 p.m. engagement—but timing was getting pretty tight.

By 3:30 p.m., we were all starting to wonder what was going on. Finally the flight crew got on the speaker once again to give us more unfortunate news: The pilot and co-pilot had timed out and could not fly anymore that day. We were now awaiting assignment of a new flight crew, who would be there “momentarily.”

“Did anyone have a watch?” my seat mate asked.

At last, by 4:00 p.m. we had our new crew, and we pushed away from the gate. Soon we were cruising at 35,000 feet, riding the Jet Stream toward Boston. A-h-h-h-h. Our new pilot, who had a soothing British accent, informed us that our descent to Logan should be quick, though we might hit some turbulence.

Fortunately, he was wrong about the turbulence. But he was also wrong about Logan. Lots of Friday evening air traffic. And so, as the sun slowly sank in the west, our plane began to circle. And circle. And circle. I asked my seat mate if she’d ever seen the classic Twilight Zone episode, “The Odyssey of Flight 33,” in which a jet mysteriously travels back in time, never to return to the right era.

Our United Flight 3791 time warp lasted until 7:00 p.m., when we finally arrived at Logan. I bade my seat mate farewell (her friend had booked a hotel room in Boston and they were going out for a good meal and stiff drinks). While collecting my green-tagged bag, I caught up with the bridesmaid, whose parents were picking her up and bringing her to the wedding, where hors d’oeuvres were just being served, so she was still going to make the ceremony.

Within another 45 minutes, I was in my car, driving west on the Mass Pike. I’d missed rush hour. The highway was dry from rain earlier in the day. My forehead swelling had receded. Hugs and a delayed Shabbat dinner awaited me.

Yes. Very glad to be back home.

Photo Credit: By Maarten Visser from Capelle aan den IJssel, Nederland (srapyard 01 Uploaded by russavia) [CC-BY-SA-2.0 (http://creativecommons.org/licenses/by-sa/2.0)], via Wikimedia Commons

Hair Wars

Evelyn Herwitz · March 11, 2014 · 2 Comments

In the Department of Little Nuisances, I find myself in an ongoing battle with stray hairs. This may seem ridiculous to report, but it’s one of the odd things about dealing with personal hygiene that comes along with my experience of scleroderma.

To wit, every day or so, one or more stray hairs drops from my scalp onto my face. I can feel it on my skin, but I have a devil of a time removing it with my fingers. In part, this has to do with the fact that many of my fingertips, at present, are swathed in bandages for digital ulcers, so I can’t actually sense the hair with my fingers. It also has to do with the fact that my fingertip sensitivity has declined over years of Raynaud’s, ulcers and nerve damage, so even with exposed fingers, I can’t always feel the thing.

Very annoying. And frustrating. Especially if the hair has fallen on my lips, but I can’t successfully blow it out of the way. I’ll end up wiping my face with my hands or wrists to get rid of the strand, only to have it stick to my clothes, where I can’t pick it off, either.

On days when I have a sense of humor, the whole bit feels like one of those old-fashioned slapstick comedy routines with fly paper, when no matter which way the actor moves, he gets more and more tangled up in himself. I’m imagining Buster Keaton.

But lately, this is just plain annoying, probably because the air is so dry from cold wintery temperatures and my clothes crackle with static electricity. I try to keep a lint roller handy, but the problem with lint rollers is that it’s hard to peel off the dirty layer—just another reminder of my fingertips’ inadequate pincer capability.

While I’m on a roll, here, the other issue with stray hairs involves my bandages. No matter how good a job I do every day to neatly wrap my fingers in clean dressings, within minutes, some hair from somewhere gets stuck to the edge of adhesive and becomes impossible to remove. Often, I have to resort to scissors to nip off the offending hair strand.

Now, admittedly, when dealing with a disease as complicated as scleroderma, this is a pretty minor issue. It’s not life threatening. It doesn’t keep me from doing what I need to do or love to do each day. One way or another, I manage to groom myself and not walk out of the house with a lot of stray hairs hanging all over the place.

But my hair wars are a constant, niggling reminder that there are a lot of things, even the most simple things, that this disease makes ridiculously complicated.

Our skin, the largest organ in our bodies, is an amazingly facile interface with the surrounding world—protector against infection, moderator of temperature, sensor of stimuli, transmitter of information to our brains. When our skin is damaged by scleroderma, our ways of perceiving and interacting with the world change permanently.

No easy solutions to all this. Patience, persistence, creative problem solving and a sense of humor are the best tools, I’ve found. But some days, I still get really annoyed about it all. And that’s okay, too. Anger has its place in dealing with chronic illness, as long as you don’t take it out on someone else or yourself. So I share this rant with you, dear reader, in hopes that you find a constructive way to vent your own frustrations about picayune problems of disease management. More power to us all.

And if you’re having a bad day, here’s Buster Keaton in The General, to give you a lift!

Video Credit: Internet Archive

body-mind balance

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