Skirmishes

Dear people, do you know of the battle of the vegetables?
All is put before you.
The tomato rises up from the center:
“My food is famous, better than the eggplant!”

The eggplant responds:
“Be quiet, tomato.
You are not worth a penny.
Two days in the basket,
you are ready for the garbage!” . . . 

from Si Savesh La Buena Djente (Dear People, Do You Know of the Battle of the Vegetables?)

A lot of vegetables will be clamoring for attention at our seder this Tuesday night. We host the second night of Passover, and there will be both tomatoes and eggplants featured—but not in the same dish, so no fighting at the table.

On Sunday afternoon, I set out to buy the freshest vegetables (and fruit, too) that I could find before the holiday. The weather was warming, the air pleasant. I backed out of the garage. Ca-chunk!  Not sure what that was about, I tested my brakes. All seemed fine, and on I drove.

That is, until the tire pressure gauge lit up about a mile down the road. I pulled over. Sure enough, I had a very flat tire. I drove carefully into a nearby parking lot, called AAA, then called home.

There was a time, long ago, when I might have tried to change it myself. In grad school, I once spent a very cold afternoon in a garage with one of my classmates, who taught me how to tune up my old Chevelle. It was fun. My hands froze, but this was long before I knew I had any medical issues.

Much as I wished I could have saved time, there was no way I would now attempt to change the tire with my hands so damaged by scleroderma. Instead, Al came to the rescue, traded cars with me and waited for AAA to arrive, while I headed off to the market.

Already behind schedule, I got there about 1:30. Never go shopping for vegetables at a Wegman’s on a Sunday afternoon, especially before a holiday week. The produce section was mobbed. Mesmerized shoppers wandered amidst rainbow mounds of fresh vegetables and fruits, sniffing and squeezing, checking for ripeness and price, with many near misses between shopping carts. “Pick me, pick me!” cried the delectable produce from their artful displays—all except the organic strawberries, on special, which had been snatched up long before I arrived.

Fortunately, the eggplants were piled at one end of the produce section and the tomatoes, at the other. I assume the produce staff are well aware of their rivalry and keep them separate.

I resolutely stuck to my list—except for picking up a bag of lovely, multicolored fingerling potatoes. One more easy side dish of roasted veggies certainly won’t be a hassle, right?

On my way to check-out, a seductive display of fresh plum tomatoes nearly broke my resolve. But I reminded myself that it would be so much more hand work to peel and seed them for the Prassa Yahnisi (Turkish Braised Leeks and Tomatoes), rather than use the Kosher for Passover canned variety that Al had already bought for me. Plus, I didn’t trust them to be sweet enough this time of year, no matter where their place of origin.

Yes, yes, I know. Sorry tomatoes, I’m afraid the fresh eggplants won this round. Maybe next year.

But . . . did you have anything to do with that flat tire?

Note: You can read the entire translated Ladino poem, Si Savesh La Buena Djente—and find wonderful vegetarian recipes for Passover and year-round—in Olive Trees and Honey: A Treasury of Vegetarian Recipes from Jewish Communities Around the World, by Gil Marks (Wiley Publishing: 2005).

Tender Is the Grass

Is it possible? Has spring finally arrived? After this bitter cold, seemingly endless winter, it’s hard to trust. But the signs are visible.

Sunday. Sunny, 55 degrees. The Red Sox opened at Fenway on Friday (Never mind that the Brewers swept the three-game weekend series—we’re just getting started, and Ortiz is still wearing a Boston uniform.)

Crocus_4-6-14As I walked Ginger round the block Sunday afternoon, I noticed tender green grass shoots peeping through thatch. Purple and fuchsia crocuses yawned on the sunny side of the street. Even in our shaded back yard, one lavender bud had valiantly pushed its way toward light.

At last. It’s the second week of April, and the forsythias are not yet aglow. But the sun is brighter, the sky, bluer, and only about a foot remains of the last, stubborn, dirty pile of snow out back.

It’s the season of promise and not-quite-there-yet.

Neighbors walk by in jackets and sunglasses. Around the corner, kids’ bikes litter a front lawn. On my route with Ginger, I reluctantly wear my mid-weight winter coat, insulated gloves and wool hat. It may be well above freezing, but 55 is still chilly for me and my Raynaud’s. My finger ulcers are finicky in the spring and need protection and mindful nursing. It will have to get into the mid-60′s before I can switch to a shorter wool coat, high 60′s or even low 70′s before I can send my winter sweaters to the dry cleaner and go without gloves.

I’m also still tending my light-sensitive eyes in the wake of complications from conjunctivitis. The infection of two weeks ago has cleared, but an allergic reaction to the eye drops left me with mild corneal abrasions in both eyes that required more medication. I can now look at my computer screen without discomfort, but reading and sunlight remain tiring. It is just never simple with scleroderma and, in my case, the added complication of Sjogren’s, which renders my eyes, nose and mouth too dry to begin with.

I’ve been extremely frustrated about this over the past week. Writing and reading are such a huge part of my work and daily pleasures that my struggles with vision have been both aggravating and frightening. Why did something as mundane as conjunctivitis have to turn into such an ordeal? What if my vision doesn’t return to normal? How long will this last? Do I always have to get an infection of one sort or another when I travel?

For all these reasons, Sunday’s promise was most appreciated. Those bright green sprigs of grass, the joyful crocus blooms, the barely visible buds on tree branches—just knowing that baseball bats are smacking over home plate once again, whoever wins—all remind me that winter really does end, even in New England.

I will retire my down coats and wool sweaters and don rayon and cotton once again. The days will continue to get warmer, on average, and longer. Leaves will unfurl and shade the street. My eyes will fully heal.

And, if we’re really lucky, the Sox will bring home another World Series championship this season. Welcome back, spring.

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

Jet Lag

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

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

In Transit

I’m heading to Chicago today, my first long distance business trip since I started my consulting practice just over four years ago. The sun is out, the skies are clear, at least for now, and it looks like I’m going to make it out of Logan before a Nor’easter barrels up the coast this evening.

After all, it is officially spring in New England. Why not more snow?

I’m looking forward to the trip and meeting my clients in person. Wonderful as it is to talk over FaceTime and Skype and GoToMeeting, there is a limit to how much you can pick up from an image on a slice of computer screen. So now we’re going to spend two days digging into content and messaging for a revitalized corporate website. It’s a puzzle that I love to solve, for some great people working to improve the quality of healthcare outcomes.

Four years ago, as I searched for job openings after I had to shut down my marketing department of a dozen-plus years because the college where I worked was in dire financial straits, I had no clue where I was headed. It’s been a long, slow haul, starting up a consultancy, and this is a very sweet watershed moment.

But before I get too comfortable savoring my progress, there is the bigger problem to solve: how finally to join the carry-on luggage club.

Up to now, I have always checked my bags on flights. I am very wary of straining my hands when I travel, lugging a suitcase, even on wheels, lifting, pulling, hoisting. But the last time I flew, my luggage got lost at JFK and took nearly a day to arrive on my doorstep. Plus, there is the added $25 luggage fee, both ways. And the time factor.

So I’m taking the plunge. On Sunday, I spent the afternoon searching for the right 9” x 14” x 22” suitcase that I actually can manage. I researched on the Internet. I tried various bags, testing zippers, pull handles, interior pockets and overall touch and feel.

With luck, I found the perfect suitcase, olive green, with sturdy construction, padded straps, full swivel wheels so I can pull it sideways as well as behind me, and a handle that lifts with the lightest touch of my thumb. All the zipper pulls are either flexible or have comfortable, soft tabs. It was an investment, but for my hands’ well being, worth the money.

Then there was the issue of all the creams and ointments that I need to manage my finger ulcers and skin. This led me to the discovery of GoTubes, which are squishy, washable plastic tubes in 1.5 and 3.0 oz. sizes that meet FAA 3-1-1 standards for carry-on. The tubes have wide mouths, so it’s easy to scoop in the creams and squeeze them out. No waste.

My third find was a soft, large purse with magnetic clasps, so I don’t have to use zippers to remove all the stuff you need at the last minute to get through security clearance. It has a center, flat zippered pocket (only one zipper to deal with) for my laptop and deep side pockets on either side, so I don’t damage my hands when digging around. The straps are soft and wide enough to stay put on my narrow shoulders. All essential criteria for ease of travel and minimal skin strain.

It’s been a scramble to get everything together in time and finish all my work before departing. Last night I was cursing at a pair of black wool crepe trousers, another great find but two inches too long. Nothing like fumbling with a needle and black-on-black thread that you can barely see because your reading glasses need a stronger prescription and your fingers can’t feel the thread as you hem. The evening was saved by my local public radio station, playing an hour of Aretha Franklin’s best hits, because today is her 72nd birthday.

So, happy birthday, Aretha. I’m off to Chicago. Have a great week, all!

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

The Stress Factor

I come from a long line of worriers. Both of my parents and their parents and, I suspect, their parents’ parents, all the way up the family tree, made an art form of anxiety.

Some of this angst was well-earned. My mother and her parents escaped Nazi Germany in 1936, but other family members were not so fortunate or foresighted to get out when it was still possible. Their Holocaust legacy always hovered in the background, somewhere out of reach and unspoken, throughout my childhood in the 1950s and ’60s.

Some of it is hard-wired. I have a writer’s vivid imagination, which serves me well but also can keep me up at night, ruminating, when I’m fretting about family or finances or how I’m going to get all my work done or the fact that I’m not sleeping and my blood pressure feels higher or my arythmea kicks up, which, of course, only exacerbates my angst.

To be fair, anxiety has its place. It can be a great motivator, as long as it doesn’t get out of hand. My coping style includes thinking through every possible outcome of a particular issue that’s worrying me and how I would handle it. This drives Al crazy, because, as he rightly points out, most of that stuff never happens. But for me, it helps, up to a point, to be proactive.

However, I’ve learned from hard experience that if I go into overdrive mode, I can make myself sick. In fact, though there is no way to know how and why I developed scleroderma, stress—and how I responded—was definitely a contributing factor. I can’t prove this, but I know in my gut that it’s true.

I first began to develop symptoms of scleroderma—odd swelling of my fingers, migrating joint pain (as in, I’d have pain in my shoulder for an hour and then it would shift to my knee, without rhyme or reason) and fatigue, plus intensified Raynaud’s (I’d always had cold hands, but not red, white and blue ones)—in my late twenties.

I had just extricated myself from a very unhappy marriage and was living on my own, struggling to make ends meet after being laid off from my job as news director at a local public radio station, thanks to budget cuts by the Reagan Administration. How could this be? Here I was, with two master’s degrees, coming from a family of long-lived marriages, no divorces. I felt like a total failure.

My response was to shift into fifth gear. I found two part-time jobs and teamed up with a public radio station manager to write a grant to create a statewide news service for all the stations that were cutting news staff due to the same budget cuts. We got funding, and I was off and running.

Run, I did. I drove all over Massachusetts doing interviews. I worked long hours writing and producing stories. I pushed myself very hard. It was great work, but I got run down, physically and emotionally.

In the midst of all this, I began having problems sleeping. I struggled with self-confidence. The idea of dating terrified me. I obsessed about my work and relationships. I was scared any time I got sick. I began to have trouble with digestion and lost weight.

My doctor couldn’t find anything wrong with me, so I just felt ridiculous to be worrying about it all, but worry, I did. I sought help in therapy, which enabled me to clarify some of my issues. I formed new, valued friendships by joining a synagogue. I prayed a lot.

But I continued to worry. Some of this angst translated into panic attacks, particularly when I went out to eat in restaurants. There were nights when I would lie in bed, awash in adrenaline.

With time, I gained more confidence, found success in my journalistic pursuits and learned to take better care of myself. My rabbi introduced me to Al, and within a few months of our first date, we were engaged. Life felt much brighter.

But the damage to my metabolism from all that intense anxiety, all the adrenaline rushes, over the prior three years on my own, was done. A few weeks after Al and I returned from our honeymoon, I saw a rheumatologist, due to abnormal blood tests, and learned I had some form of auto-immune disease—either rheumatoid arthritis, lupus or scleroderma.

This is not to say that I brought this disease upon myself. There was no way to know I had whatever genetic predisposition or was subjected to whatever environmental triggers that are responsible for this illness. But I am convinced that all that adrenaline somehow played a significant role in weakening my immune system. Plenty of research connects the two.

In conversations with other scleroderma patients, I’m always struck by similar stories about disease onset—some kind of major personal loss or trauma, followed by a deep struggle to cope and a lot of angst. I can’t say this is true for all of us, but there seems to be a common thread. Recent research points in that direction.

Would it have made a difference if I’d had a more effective coping style? I don’t know if I could have actually prevented the disease, but I certainly would have felt significantly better if I’d been able to shortcut the adrenaline rush. To this day, I still have to check myself, meditate, walk or do something to shift gears and redirect my brain when I go into overdrive.

Which reminds me. Al just sent me an email that we have meditation group tonight. No excuses, this week.

Image Credit: “Ague and Fever,” Wellcome Library, London. Thanks to publicdomainreview.org.

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

Hair Wars

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

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

Snow Squall

Thursday night, driving home from Boston. Earlier in the afternoon, a few snow flurries, but nothing significant, just a sugar coating on sidewalks, if that. It’s quite dark, no stars visible, but traffic is light. Relaxed, I’m reviewing the day’s events as I glide west, listening to classical music on the radio.

driving_Night_snowA little topography: As you drive west from Boston on the Mass Pike, the elevation gradually rises. Years ago, when I commuted every day, I’d always marvel at how snow would often start as soon as I passed the Sheraton Tara landmark in Framingham, just because the elevation is a little higher and temperatures, a little colder. Other times, the snow line begins along Route 495, farther west.

I know every mile of this route like the back of my hand. But it can morph into alien terrain without warning when the weather shifts.

All of a sudden, out of the black, a cloud of snowflakes hurls into my windshield as I exit off 495N, onto 290W, headed to Worcester. Within minutes, I am in near white-out conditions, or whatever the equivalent is when it’s snowing like crazy and completely dark.

I slow down, but I can’t see the lane markers, because the snow is sticking to the highway, though, remarkably, not to my windshield. Ahead and around me, drivers are whizzing by. I assume they never took physics. I’m an experienced winter driver, with 12-plus years of daily, grinding commutes under my belt, including some harrowing drives home in severe snowstorms, and I don’t mess around.

But these fools don’t seem to understand—even on dry pavement, you need one car length stopping distance for every 10 mph of speed. When snow clings to untreated pavement and the road becomes slick, you need even more of a cushion. Especially on the downgrade that leads for miles before you rise again into the Worcester hills.

Swirling snowflakes refract the beam of my headlights as cars blithely pass me on the right and left. One other experienced driver a few car-lengths ahead has slowed down, also, and flips on flashers. I follow suit, reduce speed to 35 mph and try to stay in the right lane, as best I can, occasionally drifting over the rumble strip at the lane’s border, which I can only hear but not see. Red glowing taillights slip beyond into the gloom. One car or truck with flashing lights has pulled over into the emergency lane, but the snow is so intense that I don’t notice it until I’m within about 60 feet. Not a safe choice.

There is absolutely nothing to do but keep moving forward at a safe speed with adequate distance between my car and the others, as the snow keeps flying, and pray that no one spins out into me.

I bite my thumbnail. I keep breathing and tell myself not to panic, because it will not help. There is nowhere to go but forward. I realize that Beethoven’s 1st Symphony is playing on my satellite radio. There is something stable, soothing and totally ironic about this beautiful music floating in the midst of sudden, intense, relentless snow pouring out of the dark, dark night. Even as I drive, I feel suspended in time, trapped in a snow globe.

Nowhere to go but forward. I focus on the notes. I stay as far out of the way of the other cars as possible. My flashers click on-off-on-off-on-off. I mark the red-yellow-red-yellow-red-yellow taillights of my unknown friend using flashers, a silent soul mate, farther ahead in the dark, where the road curves. I keep breathing. I look for green highway markers, counting down the miles. Beethoven finishes and Corelli begins, with measured tempo.

Finally the highway bottoms out and begins the rise over Lake Quinsigamond. Tall lampposts illuminate the stretch into Worcester. I turn off my flashers. The snow eases and the lane markers become visible again. By the time I reach my exit, it’s as if nothing happened.

Nowhere to go but forward.

Photo Credit: WSDOT 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

“How Is Your Heart?”

Sometimes, a chronic medical condition can save your life.

It is February 15, 1916. My maternal grandfather, Max Kronenberg, age 21, is heading to the Russian Front aboard a train with fellow German soldiers, destination unknown.

Max_Kronenberg_1914He has been assigned to a unit responsible for field communications, stringing telephone lines and monitoring messages between command posts and troops in the trenches. “Who knows whether that’s good or bad,” he writes to his parents, back in Berlin. “I did not make a special effort for it but don’t want to change it either. . . .”

I am sitting in bed late Saturday night, a huge black binder on my lap, reading my mother’s translation of Max’s wartime correspondence. This and other binders of family memorabilia have been collecting dust for more than a decade on the bottom shelf of our bedroom bookcase. 

The collection is just one of those things I’ve always meant to read, but never gotten around to until a few months ago, when I was contacted by faculty of the Technische Universität Berlin who are writing my grandfather’s biography. A professor at the TU until he lost his job when Hitler came to power, my grandfather wrote seminal texts for the field of machining science, a precise engineering specialty. I’ve sent a photo and some family stories to help with the book. Now I’m digging deeper to learn about this man who was responsible for enabling my grandmother and mother to leave Germany in 1936, before it was too late for Jews to escape.

Ten days later, February 25. Max’s train departs from Vietz, carriages and guns decorated with pine branches and flags. He is an artilleryman in the Bavarian Cavalry Division of the 824th Field Artillery Battalion, 10th Army of the German Empire. Food is plentiful, the compartments comfortable—they travel on an express train where each soldier has a bench to himself and two blankets. “Could you obtain two cat pelts for me?” he writes. “They are supposed to be the best prevention for cold feet. Our tailor makes slippers to measure.”

Comforts are fleeting, bravado short-lived. Traveling by train through Poland, then on foot, the battalion marches over many kilometers of deep snow and ice to their position, 8 km from the front. Max’s unit is stationed near Lake Narach, in present-day Belarus.

Food grows scarce. As snow melts, the ground turns to mud. The Russians, prompted by French allies who want to deflect German forces from Verdun, agree to launch an offensive against the Germans in the Lakes region. The Russian artillery bombardment lasts two days, but then they make the mistake of crossing no-man’s land between trenches in groups and are massacred by German machine gunners.

“It was worst on March 18/19,” writes Max. “Today it is rather quiet again. . . . Three days ago . . . one could hear an 18 hour bombardment from there. It should be over soon. In the first place they are getting their heads bloodied, and secondly, it is thawing now and therefore difficulties in transporting grow to undesirable proportions.”

He writes as he tries to dry out his soaking clothes before a smoky oven, after falling hip-deep in a water-filled ditch, en route to setting up new telephone poles: “Could you send me some canned vegetables? The only packages that arrive quickly are those weighing 1 lb. But you make several small packages. One depends on these packages. I don’t manage very well with the rye bread because I am always extremely hungry.” My mother adds a translator’s note: “extremely was crossed out and ‘very’ substituted.”

There is no great love of country or the German cause in these letters. He is a resolute soldier on the wrong side of history, doing his duty. Mostly, Max writes about the daily grind of army life and asks about the packages his mother sends, filled with chocolate, sausages, pies, cigarettes, butter, even raw eggs, that arrive too far apart, often with goodies missing.

In turn, my great grandmother Ella frets about not hearing from him for weeks at a time. His account of his fall into the ditch frightens her when the letter finally arrives. Max’s younger brother, Walter, has also been conscripted and not heard from for weeks. “Nothing much is happening here, it is so terribly quiet at home as you can imagine, the two of you so far, sometimes I feel so wretched and no prospect of peace according to the last speech of the Reich Chancellor,” she writes. “Write immediately and daily you know how I/we wait for news. How is your heart?”

This is the first mention of Max’s heart problem. As the months grow longer and conditions harder, he describes palpitations, although his telephone unit remains a safe distance behind the riflemen’s trenches. Sometime during the spring, he sends a note:

“So that you won’t get a shock when you see battery 824 mentioned in the casualty lists. Our half battery stationed farther south than we are incurred some casualties the other day. One dead and three injured. The guys were in high spirits and were showing off within site of the enemy. An artillery salvo found its target. Too bad about the guy who was killed, he was nice. The others were slightly wounded. So, no reason to fear.”

Long, tedious days are spent cutting trees for log roads to enable troop movements over soggy ground. Every evening, the soldiers hope for letters and packages from home to supplement their meagre rations, share photos of loved ones that arrive in the mail and debate the war’s end. Max receives an occasional newspaper.

“Then comes always the question: Kronenberg, is there nothing about peace in the paper?” he writes in late April. “The smallest phrase is analyzed, debated. Then there are long debates about peace, each one says something whether optimist or pessimist. The most important question is the order in which troops might be discharged.”

On April 28, he writes of a close call. While stringing more telephone wires, Max and a few comrades cross an open field and hear some artillery fire. At first they don’t realize they are the targets, but then “we hear shrapnel balls striking into the field about 50 m in front of us. We used the interval between loading to run to the log cabin approximately 200 m away.”

After an hour’s wait, the men go back to retrieve the roll of wire and attract more enemy fire. “There is a tree shortly before the cabin and I wanted to throw the wire across it—yea—that’s a laugh—an asshole (excuse me) of a Siberian sharpshooter shot at me about 2 m above my head. At that I removed myself. No one is going to hit me.”

Following this episode, which terrifies his parents, Max’s letters become more crisp, annoyed, bitter. He spends long days in the trenches, manning the telephone. He anxiously awaits packages from home. On May 9 he writes, “Today I feel miserable again especially because the lice are plaguing me terribly. If only this thing would come to an end—or that I would be promoted. As a NCO life is better, that’s the deciding point in the matter of promotion. I hope I will get leave soon. My heart isn’t doing too well, either, but it’s useless to go on sick call here.”

A week later, he chides his parents about their concerns: “If you are going to get so upset about 3 errant bullets then I won’t write anything about the war anymore. There’s no point to it! Being here in the East is simply life insurance against Verdun. It’s completely quiet here right now, since our lines are intact and I don’t go past them anymore and reckless I am not. But perhaps I will soon be transferred from the battery. There’s supposed to be a new artillery company being formed and they’re looking for student and graduate engineers from the Institute of Technology. If the battery would let me go, I’d be in fine shape.”

Soon, Max gains permission to apply to the new unit. After three days in the trenches, he returns to quarters and is ecstatic to receive letters and three packages from home, including zweiback, clean underwear, canned goods, hard candy, sugar, peppermint, sausage and a tin of herrings, as well as 20 marks to pay for supplies at the overpriced canteen.

He asks for soap and a copy of Kant’s Critique of Pure Reason to be sent, as well as some math textbooks from home. “Send the books as quickly as possible because when I have telephone watch at night from 12 to 4 I have a lot of time to read. Otherwise I feel pretty well. My heart acts up a bit, quite frequently, especially when I walk a lot, but there is no use going on sick call here.”

In June comes a promotion to Lance Corporal. His application is accepted to the new unit, a Sound Measurement Troop that monitors enemy positions. He longs for socks from home. His new unit is quartered far back from the front. “Today a personal miracle occurred,” he writes sardonically on June 22. “After a rest cure of 4 months in the Russian forests, meadows and fields I took a shower and deloused myself and my ‘rags.’ The bath house and delousing station were donated by a national association of pious maiden ladies from Silesia—I think—as a gift of love (pardon the crude soldier’s joke) . . . .that’s where I discovered what I looked like under all the dirt.”

More trees are felled as Observer Post 3 builds new quarters. Other than mosquitos, Max enjoys his forays into the forests. “The trees are gigantic and give wonderful shade. The birds don’t think about the war and I don’t either. . . . A little brook flanked by tall shade trees gurgles peacefully. Unfortunately the peace is disturbed by the boom boom of the anti aircraft batteries shooting at airplanes. One can’t see them but hears their buzzing. Little white cloud dots of shrapnel mark their path.”

Weeks pass. By the banks of the Svilka, Max celebrates his 22nd birthday with his comrades on July 8 with three bottles of Bordeaux purchased at the canteen and cigarettes. The unit of engineers builds a sturdy cabin for shelter that is the envy of other troops. He takes shifts monitoring sounds of enemy artillery from a booth hidden in the forest. Compared to the trenches, the daily routine is more relaxing. But stress never lifts. “Sometimes one is happy, sometimes one is wrapped in depression,” he writes to his preteen sister, Tutti, “because as nice as it sounds it’s different at home, to be in Germany is something completely different and to be a civilian!”

To his mother, as the summer heat intensifies, he writes: “I can’t exactly aver that I am on summer vacation. I am left with pretty severe rheumatism from the winter and frequently become aware of my heart in this heat. When there is a sudden rain storm, it’s the well know soldier’s complaint: Kidney pains. Now you must not think that I’m a walking corpse. Washed out, yes. But the others aren’t any better off.”

There are 12-hour rotations in the hidden booth, where the soldiers take turns at 4-hour shifts, watching and listening for enemy activity. If anything happens, “the measuring starts.” They nap when action quiets. Each rotation is followed by a 24-hour respite. Then, on August 7, at 11:00 p.m., the unit is roused with shouts. Quickly they pack up and begin a long trek by foot, truck and train to the southwest, by Max’s compass. As they travel across the Russian border into Austria-Hungary, they are passed by an express train headed to Vienna. “Strange sight. Women who look elegant and clean observe this military swarm with curiosity,” Max writes his parents.

Once in Austria, they head east, again, still with no information about their destination, and stop at a town he identifies as S. “We meet train after train with wounded, munitions trains, military personnel trains are back and forth. We await new orders in S. It takes a long time and we help load the many wounded on trains. A terrible picture: Moaning, sighing, wild hallucinations, smell of blood and carbolic acid and in between the trucks bringing more wounded.”

They move on, to be stationed in Galicia. Food is in ample supply. Meat every night, potatoes, vegetables harvested from the gardens left behind by former inhabitants who fled from the invading forces. The unit settles into new quarters—a former pig sty with a straw roof and walls. ”I am fine, just very homesick,” Max writes.

On a late night, 8 km trip on August 29 with a comrade to fetch mail from the army post office, Max gets drenched in a downpour and falls in the puddled streets, soaking through all his clothes. They bring the heavy load of mail and packages back to their new observer post in an oak forest. Rain pours through cracks in the structure. He finds a bottle of cognac in a package from home.

“In two gulps it is half empty! Did that feel good!” he writes. “Huddled in a wet blanket and sitting on the backpack while it continues to pour without pause to accompaniment of infantry fire. Sleep is a figment of one’s imagination. Another swig of cognac! I am curious whether I caught cold. Up to now I just noticed increased heart activity.”

Two weeks later, he is transferred to a field hospital “for heart and nervous disorders.” By winter, he has returned to Berlin, working with factory administration, back where he had been before the war.

Max_KronenbergSo ends my grandfather’s World War I odyssey. Max lost most of his hair during his tour of duty. When my grandparents would visit us as children, my sister and I used to love standing behind him as he sat in a chair and dance our fingers atop his very bald pate. He would pretend we were flies and swat his head with a newspaper, to our delighted giggles. 

But I did not know him well. A modest, remote, serious man, he never shared all that he had experienced in the war or during the years after Hitler came to power. We never discussed what it took for him to leave his homeland, come to the United States and save many family members in the process—though not his parents, who refused to leave Germany and died in Theresienstadt

If it weren’t for his heart problems, Max Kronenberg may never have made it back from the Eastern Front and on to become a path-breaking mechanical engineer, who, among other accomplishments, consulted to the U.S. Secretary of War during World War II and the United Nations. If it weren’t for his courageous heart, I would never have existed. May his memory be for a blessing.

Image Notes: The top photo was taken of Max in 1914. I believe he is wearing the uniform of his student fraternity, since he was not conscripted until 1916. The bottom photo is of my grandfather as I remember him. This was taken at a professional conference or an awards ceremony when he was in his 70s, to the best of my recollection. Some of his professional papers are housed in the Smithsonian Institution.

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.

Weighing In

Glow little glow worm, glimmer, glimmer,
Someone’s getting thinner, thinner . . .

I’ve been losing weight. This is not intentional. Much as I’ve disliked the extra pounds I gained once I hit menopause about five years ago, all of which settled in my waist and hips, I’m still on the thin side.

A few weeks ago, I noticed that I could button a pair of old wool pants that had been too tight for years. Suddenly, they fit again. At first, I was delighted. Then I weighed myself and realized I’d dropped at least four pounds since the last time I had checked, maybe a month or so prior, and about eight pounds since last summer.

I mentioned this to my Boston Medical Center rheumatologist at a recent check-up. He said I didn’t show any evidence of an overactive thyroid—Graves’ Disease—which, among other things, makes you feel hot all the time. Certainly not the case. “Let’s keep an eye on it,” he counseled.

Teeth are crooked and her hair’s peroxide,
In the moonlight, she looks cross-eyed . . . 

Another week-and-a-half passed. I checked my weight again one morning and realized I’d lost another pound. This scared me. I called my local internist’s office to get an appointment.

“I’m not sure why I’m losing weight,” I explained to the nurse who answered my call. “Maybe it’s because of the extreme cold and my Raynaud’s? Maybe I’m burning a lot of extra calories?”

“I sure wish that would happen to me!” she exclaimed.

I didn’t know how to respond, even as I was expecting her comment. When I was in the active phase of scleroderma, decades ago, I could not keep weight on. Everyone I knew was jealous. No one was sympathetic.

But the reality is, maintaining weight can be as difficult a challenge as losing weight when your metabolism is messed up. And being too thin, especially with this disease, only chisels your face to an extreme caricature—and makes it even harder to stay warm.

My adult weight has fluctuated over time, like anyone else’s, to a high of 140 when I was pregnant, and a low of just under 100 when I was in the active phase of scleroderma and also dealing with lactose intolerance. Hovering around the 100 pound mark, I had to drink supplements to bulk up. They made my head and teeth buzz when insulin released into my system, and I hated it.

I’m nowhere near that low, now, but when the scale dipped to 113 ( I’ve been around 121 for longer than I can remember), an orange flag waved in my mind.

Bells on her petticoat tinkle in the breeze,
High above her bow-legged knees . . .

My doc ordered comprehensive blood work and a thyroid panel and instructed me to keep track of my food intake until our appointment. I complied, and when the labs came back (my local medical group offers patient access to select electronic medical records), I was relieved that all the results were in the normal range.

I went to see him the following week. As we reviewed the details, he confirmed that the blood work was fine, no indication of scary possibilities, like cancer.

But the mystery remained. Why have I lost this weight? Maybe my extreme cold weather theory is correct. Maybe it has to do with subtle diet changes—I’ve subbed low fat yogurt for instant pudding to coat my stomach when I take Ibuprofin twice a day. Or maybe I’m developing some intestinal malabsorption issues with my scleroderma.

The only way to find out? More tests. He enumerated the delightful options: More blood work! Stool sample! CT scan of my belly! A colonoscopy! And what difference would the findings make? Not clear. We looked at each other and agreed: Wait and continue to monitor.

All the things that people say,
Couldn’t keep us away!

So, that’s what I’m doing. I’m not worried as I was, before. My weight has stabilized for now. I feel fine, except for the fact that this winter is just too damn cold. Even as an old, nasty childhood ditty (thinner, thinner) seems stuck in my head, I’m just letting it roll. There are much better ways to occupy my mind, and listening to Bizet’s Carmen Suite as I write is a great place to start.

Meanwhile, if I feel like eating that extra Oreo, no harm done.

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.

Pharmacopia

Lately, it seems, I’m running to the vet or the pharmacy every week or so to refill a prescription.

Ginger, our 15-and-a-half-year-old Golden Retriever, needs a steady supply of her chewable, yummy, liver-flavored pills for arthritis, plus her chewable, yummy, other-flavor pills to help her cognition (I could use some of these, too, for those ever-more-frequent senior moments), and another pill for her thyroid, and another med for her arthritis (which I just discovered comes in pill form, not yummy or chewable, but considerably cheaper than the liquid version), plus a stomach acid blocker.

For me, there are about a half-dozen prescriptions to manage at any one time, one from a specialty mail-order pharmacy that requires a monthly blood test, and others that run out on a staggered schedule and require my attention every couple of weeks or so. Plus some vitamin supplements and over-the-counter meds to round out the mix.

I’m sure there’s a more efficient way to keep track of all this and probably some cheaper alternatives for Ginger that I have yet to discover.

I need to check out substitutions for some of my own meds, as well. Recently my deductible on two different scrips jumped from $25 to $50. One of these is a monthly refill. It all adds up, quickly.

Even still, I’m blessed with good medical insurance through Al’s employer (at least, that is, until we find out what the new plan will be for next year, since the hospital where he is a social worker was recently bought out, once again). One of my prescriptions would cost nearly $5,000 a month without coverage. Very sobering. I think about this every time I take one of those little pills, which I need twice a day. I try to be very careful not to drop one.

When I rise and before bed, I line up one set of pills and swallow them with water. Then, after breakfast and dinner, Ginger and I take pills together. Despite her age, she is actually very good about reminding me if I get distracted, because for her, medicine is a big treat.

Not only are the chewables yummy, but she enjoys having her other pills with a little butter, plus a scoop of low-fat ricotta and a little bread or left-over challah, to be sure the arthritis meds don’t irritate her stomach. She will start pacing back and forth to nudge me if I miss the timing, which she seems to know by the amount of daylight or lack, thereof, and where we are in our daily routine of meals.

I do not look forward to taking my meds, nor to constantly running to refill prescriptions, nor to paying for it all. It is just one of those things that needs to happen on schedule.

But I think Ginger has the right attitude. In her world, every day is an adventure to be savored.

My meds certainly help me feel a lot better than I would without them. They are a nuisance to manage, a growing expense. But I am extremely grateful to have access to the drugs I need in order to stay as healthy as possible.

Now, if they could only come in chewable, yummy flavors.

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.