Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Fantastic Voyage

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In 1966, when movies still cost 50 cents and popcorn a quarter, I went with a friend to the Peekskill Paramount movie theatre on a Saturday afternoon to huddle in the crowded balcony with a bunch of other giggly, wise-cracking kids and watch Fantastic Voyage.

In what has become a sci-fi classic, a team of miniaturized surgeons enter the body of a scientist to zap a life-threatening, inoperable blot clot in his brain; the scientist is the only person in the world who knows how to make the miniaturization state last more than an hour, a secret essential to U.S. Cold War military strategy.

The team travels in a mini submarine through blood vessels and organs, battling antibodies along the way and a fiendish saboteur in their midst. If that isn’t enough to pique your curiosity, the movie stars a very young Rachel Welch and won two Academy Awards for some pretty neat special effects before the days of computer animation.

I’ve been thinking of this movie lately and just added it to my Netflix queue. One of the curious aspects of living with a complicated disease for so long is that I’ve seen more and more of my own internal landscape in recent years. With each new complication of my scleroderma, there are tests and more tests. And with digital imagery and optic probes the norm in medicine, and X-ray results easily viewed on an exam room computer screen, I’ve seen some pretty fantastic, albeit sometimes disturbing, sights.

There are the basics—all the many, many X-rays of my deteriorating hands, with each iteration revealing less bone at the fingertips and more starbursts of calcium floating under the skin. There are some foot X-rays, too, more recent, to confirm calcinosis in my toes.

There was the MRI of my chest a few years ago, when a CT scan to check rasping in my right lung (a possible sign of interstitial lung disease) revealed a questionable spot. It turned out, my pulmonologist explained while we toured the results on his computer screen, that the spot was nothing to worry about, just evidence that I’d contracted histoplasmosis years before, probably while spelunking one weekend near Pittsburgh when I was in grad school. As he scrolled through the MRI, the inside of my lungs revolved like the ceiling of a planetarium speckled with tiny white stars. Some scarring, yes, but so far, nothing too debilitating.

There have been regular echocardiograms to monitor signs of pulmonary hypertension, a late-stage scleroderma risk. Sometimes I close my eyes and try to doze through this non-invasive but often uncomfortable procedure, which requires the tech to press a rolling probe all over my chest and ribcage. Other times I’ll distract myself by watching the dark computer screen, with its blue and red images of blood surging through my heart, like an animated deKooning.

More tests. A CT scan of my brain and skull X-ray one Fourth of July weekend when I started to go numb on the left side of my face. Cross-sections of my very own convoluted gray matter. Yes, that’s where all those thoughts and images and feelings ping around. No stroke, thank God; rather, an inflamed trigeminal nerve was the culprit. But there was something eerie about seeing an image of my own facial skeleton, not some Halloween mask—the exact position of my eye sockets, nasal cavity, cheekbones, jaw—shades of what will remain when the rest of me turns to dust.

Of course, there have been all the routine images, too—ultrasounds of my womb when I was pregnant with Emily, the squashed elliptical pancakes of my breasts as seen on a mammogram, a slew of dental X-rays revealing how some of the roots of my teeth are resorbing—a rare scleroderma complication. Fortunately, I slept through my colonoscopy a few years ago.

I’ve seen the pink marbled walls of my bladder and the black-and-white image of a PICC line snaking into one underarm vein and then the other, when the first side was blocked by too much scarring. Not fun.

Most intriguing, once we got past the unpleasantness of inserting an optical probe through my nose, was a view of my pharynx. This took place when I saw a speech therapy specialist a few years ago to evaluate problems with swallowing. There are times that I feel like food gets stuck in the back of my throat, and I worry about choking. She handed me items to swallow—crackers, apple sauce, Jello—tinged with Kelly Green food dye, so we could see if the pathway to my windpipe closed properly as I ate. It did, a great relief, and also fascinating. I thought of a camera lens opening and closing when you squeeze the shutter.

I’m sure, as time goes on and my scleroderma does its own thing and medical technology becomes ever more sophisticated, I’ll see even more of my innards. Not the kinds of images you put in your photo album, like pregnancy ultrasounds. But miraculous, nonetheless. Even if the reason we’re digging around with probes and such is due to damage caused by an insidious disease, I’m still amazed by the view.

We take our bodies for granted, all the inner workings so hidden beneath our skin. If we could see what was really going on inside, all the intricacies of our interior universe, how the balance here affects the balance there, would we take better care?

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.

Star Gazing

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Since Thanksgiving, lying in bed before sleep, I’ve been exploring the constellations beyond our ceiling. I do this with the help of the StarTracker iPhone app. Day or night, inside or out, cloudy or clear, you can raise your iPhone to the sky and see what stars and planets are overhead. Very cool.

I’ve been fascinated by the night sky since childhood. So last Wednesday, with help from Emily, home for the holidays, I downloaded the app and we bundled up to go outside and give it a test drive. The night sky was overcast, charcoal gray, and we could only see the moon and one star. But with StarTracker, we could still locate the position of our favorite constellation, Cygnus the Swan, flying westward toward the horizon, as well as Cassiopeia’s glistening W and where to seek Jupiter when skies cleared.

This was at the end of a difficult day that had begun at 6:50 a.m. with a call from Mindi in Tel Aviv, reassuring me that she was fine and far from the bus bombing minutes earlier, and had ended with our relieved evening texts about the cease fire between Israel and Hamas. In the middle, I’d received an email from a friend whose sister had been dying from scleroderma, with the sad news that she had passed the prior week.

Later that night, struggling to sleep after the day’s emotional roller-coaster ride, I thought about my friend’s sister, how her family’s sorrow must be mixed with relief that her soul was finally free of the rigid prison her body had become. I went to the bathroom window to see if the moon’s gleaming face was still visible. I matched it to my iPod’s screen and looked again for Cygnus.

The next evening, after a great, grateful Thanksgiving meal at our cousins’, we came home to clear, cold night skies. Em and I bundled up again and took my iPhone outside. This time, we saw Cassiopeia sparkling high overhead, found Jupiter’s bright pinpoint nearby and Polaris at the tip of a barely visible Ursa Minor. From the app, I learned to identify Cepheus’ box with a peaked roof. Em got cold and went inside, but I stayed a few minutes longer to figure out more constellations—Pisces, Perseus.

Back in our warm kitchen, I sat down with my stars and planets field guide and began reading, trying to figure out the relationships among the constellations. How did sailors and shepherds understand the night skies they knew so well? No apps back then. Of course, the answer was stories.

In Greek mythology, Cassiopeia was married to King Cepheus of Ethiopia. No wonder they were assigned neighboring constellations. Nearby are also the constellations of Andromeda, Perseus and Pegasus, the winged horse; Andromeda was Cassiopeia’s daughter, whom Perseus rescued from Cetus, the sea monster (another close-by star cluster), after he escaped on Pegasus, after slaying Medusa.

Here in the West, we understand the night sky through a Greek lens. But, I wondered, what about other cultures? The Chinese have their own constellations that look more like zig-zags than enclosed shapes, with names like Celestial Kitchen and Mausoleum, and legends about individual stars, including several in our constellation Orion that the Chinese describe as fighting brothers who had to be separated.

And what of the Arab world? Here, intermingling of Greek and Arab cultures produced Arabic names for Greek constellations. Cassiopeia is known as That Al-Korsi, roughly translated as Who (Lady) Has Chair, describing the Greek’s illustration of a sitting woman represented by the W of stars. Cygnus is Ad-Dajajah, The Hen. Ursa Major, which includes the Big Dipper, is Ad-Dubb Al A’kbar, The Greater Bear.

Every culture has its names for the brightest stars. Ancient astronomers of the northern hemisphere, wherever they lived, recognized the centrality of Polaris, the North Star—Tien Hwang Ta Ti in Chinese, for the Great Imperial Ruler of Heaven; Al Kiblah in Arabic, for the star least distant from the pole—all observing how other constellations wheel round it as the Earth revolves on its axis.

We all share the night sky. We all share the Moon’s silver face, the cycle of life and death. Our beautiful blue planet, so massive in our minds, is but a gleam of sapphire in the endless universe. Seen from afar, do rockets fired at enemies appear as sparks? Does a freed soul emit energy into the void?

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 New Normal

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After Sandy skirted most of Massachusetts and spared us from week-long power outages and cold I couldn’t manage; after the nail-biting climax to the presidential election; after the Nor’easter that turned out to be more of a threat than a reality in these parts; after a major water main broke in Worcester last week, forcing the city to shut off the entire water supply for the night and institute a 48-hour boil order that had me fretting about how to keep my ulcer-ridden fingers free of infection; after all that, when the water was clean and the power was on and the heat was working and the sun was out—I came home to my email last Wednesday to learn that Israel and Hamas-controlled Gaza were shooting rockets at each other and all hell was breaking loose just 44 miles from where our oldest, Mindi, lives in Tel Aviv.

It was about 8:00 p.m. when I sent Mindi a text to find out how she was doing—3:00 a.m. her time. I figured she’d see my message when she woke up for work.

A few minutes later, the phone rang. It was Mindi. She had been out late with friends, talking about the situation, finding out who of her friends in the Israel Defense Force had been called up. She sounded okay, tired but confident, and it was a great relief to hear her voice. We agreed she would check in again on Thursday.

The next day, I was working on a project, trying to concentrate while scanning whatever news I could find about events in Israel. American media were still preoccupied with the Petreaus scandal and election aftermath. I discovered the Times of Israel live blog, which gives excellent up-to-the-minute coverage. I sent Mindi a text about when I would be home to talk.

Around mid-day, the phone rang. I recognized Mindi’s caller ID and answered right away. Long pause on the other end.

“I know you’re going to hear about this, so I wanted to tell you there were sirens in Tel Aviv today,” she said. Her voice was measured, carefully paced so as not to upset her already anxious mother. She explained how she had gone to her apartment’s bomb shelter for a half-hour, no damage from the rocket attack, and she was doing okay. Neither of us knew what to say. I tried to stay calm and absorb her news. We agreed she would continue to let me know if there was another attack. I told her I loved her. We hung up.

I spent the rest of the day trying to understand what was going on. I couldn’t concentrate. I was fighting tears. I skipped my evening dance class to be home with Al. We spoke to Emily and shared all of our concerns. I read as much as I could online to stay informed.

Friday morning, I woke around 7:00 a.m. to find a text from Mindi that there had been more rockets, but she was fine. She sent me a picture from her iPhone of a Fox news reporter interviewing people in a Tel Aviv café, shortly after the all clear. I asked her if she knew where the public bomb shelters were. She wasn’t sure. I spent the next 20 minutes on my iPhone, researching, and discovered that underground parking garages are on the list. I sent her all the links. I wondered how this could be, that I was looking up information about bomb shelters in case my daughter is on the streets of Tel Aviv when a rocket lands. Later, as I read of Hamas’s threats to send suicide bombers into Israel if the IDF sends in ground forces to Gaza, I texted updates. “Please don’t ride the buses or go to cafés right now,” I wrote.

On Saturday, I was relieved to read that the IDF had placed a fifth Iron Dome anti-missile defense system in place to cover central Israel. Hours later, it downed another missile heading for Tel Aviv. Mindi wrote, reassuring me she was fine and with friends.

On Sunday, I woke to a 6:45 a.m. text that more rockets had been intercepted while she was taking care of her toddlers in the Tel Aviv nursery school where she works. They were fine, she wrote. Then another message, about six hours later, that there was yet another missile attack, again intercepted. She went to the bomb shelter in her apartment. We texted a bit. She was on her way to friends for dinner. I told Al, who was outside, raking leaves. Then I went back to my writing, taking care not to bang the fingers sprouting new ulcers from all this stress.

Later, we spoke by phone. “You sound sad, Mom,” she said, edgy. No need to be concerned, everything is normal here, she insisted. I understood. She was coping on her own, and I needed to back off. Our old dance.

And so it is. My new routine: reading updates several times a day to keep on top of the news and any glimmer of a cease fire, trying my best to concentrate on my work and what’s in front of me, trying not to worry about my very capable 24-year-old who can manage by herself when rockets are flying toward her city, thank you very much, praying for peace, praying for the safety of innocents.

It’s amazing what you can get used to. Like the coming and going of strange, extreme weather. Like learning how to bleach your hand-washed dishes during a 48-hour boil order. Like sprinting to a bomb shelter within the two minute window you have after an enemy rocket launches toward your city, then going about your business. Like accepting that you have no control over what’s happening to someone you love so much, so far away. Like living with the drip-drip-drip of a chronic disease. Amazing.

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.

Waiting for Sandy

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Rain drips off the ridge of the bay window outside my home office. Leaves tremble and branches sway. One long, thin lilac branch waves back and forth like a pointing finger. The sky is the color of soaked cotton balls. I can hear no birds, only the patter and plop of rain drops falling off the tree limbs overhanging our roof, and the wind’s sigh.

It’s strange and curious and unnerving, this waiting for Hurricane Sandy, billed as the worst storm to hit the Northeast since the Hurricane of 1938. I wonder where the birds and squirrels go, how they will protect themselves when the gale batters their tree-top homes. We live within the red-lined high wind warning zone in Massachusetts, expecting gust of 40 to 70 miles per hour at some point later today. Maybe overnight. And there will be rain. Lots of rain.

I worry about the trees that sustained so much damage in last year’s freak October snow storm, when the night was filled with the gunshot of cracking branches. Our neighbor’s old Silver Maple toppled into our back yard, blocking our kitchen door and missing the roof by inches.

And I worry about losing power for days. This is my biggest concern. I can’t withstand the cold, even as the weather is mercifully well above freezing this time around. The utility companies have promised speedy, efficient repairs to downed wires. They’re anxious to repair their damaged reputations from last year’s storm that left thousands without power for days and even weeks. We were lucky and provided hot meals and showers for neighbors who went without heat. But will our luck hold again? If everyone loses power to this monster storm, where can we go?

It’s a stark reminder of how control is an illusion—often the way I feel about my health. A week ago Sunday, out of the clear blue, I woke up with cellulitis in my left elbow, just one hour before I was leaving for a two-day business trip to New York. Not knowing how quickly the red, puffy skin infection would spread, I took a gamble on managing with oral antibiotics that I always have on hand, per discussions with my infectious disease specialist, and headed out the door.

For the next 12 hours, on the train, at Penn Station, during meeting breaks and at my host’s home, I kept monitoring the progress of the warm redness, telling myself if worse came to worse, I was at least in a place with a high concentration of excellent ERs. “You know the cost of making a bad call,” warned the ID doc who was covering over the weekend, when I called Sunday night to report that the cellulitis had spread around the side of my elbow. “Yes,” I answered, “it could go septic.”

I promised I would go to an ER if I spiked a fever or if the infection spread any farther and prayed the antibiotics would finally kick in. Somehow, I got to sleep that night and woke to discover that the redness was receding. The rest of my meetings went exceedingly well, and I even had a spare hour to walk the High Line for the first time, under exquisite blue October skies.

That day seems a long time ago, already. Now I’m just sitting here, waiting to see if this mega-storm will be as bad as the forecasts predict, or if it will lose power as it spins over land.

We have no control over these things, of course. Whatever extreme weather we have set in motion with global warming, even if all the nations of the world finally get together and commit to reducing carbon emissions, we will all have to live with for years to come. At least we have excellent weather forecasting, unlike so many caught by surprise when the fatal ’38 Hurricane barreled over Worcester and up the Vermont-New Hampshire border. We’re also blessed with extensive emergency support. But there’s nothing I can do to stop another tree from falling or the wires from coming down. All I can do is stay indoors until the storm passes.

And there’s nothing I can do to prevent another mysterious bout of cellulitis or whatever else my scleroderma throws my way without warning. It just is. All I can do is take care of myself as best I can and not let this disease stop me from living my life fully. From where I sit, there’s no other choice.

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.

40th Reunion

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I stare back at myself from the pages of my high school yearbook—soft cheeks, full lips, eyes wide, so serious—self-conscious, not doubt, about teeth I considered far too large for my mouth and long hair that was always too frizzy to lay flat.

On page after page of the yearbook I co-edited in 1972, my classmates are captured in shades of gray, clothed in requisite suits and dark blouses, faces frozen in bright smiles, somber gazes and cynical smirks—17-year-olds anticipating life beyond high school.

And here we are, some of us, at least, gathered at an elegant inn overlooking the Hudson in autumn for our 40th high school reunion, to find out what really became of us during all those years. Very few of my circle of friends are attending, but I’ve decided to go, anyway. I’m curious and, yes, feeling a bit nostalgic for that time of infinite possibilities.

I’m met at the door by a classmate I barely knew who chaired the event. “You look beautiful,” he says, guiding me inside. You probably say that to every woman who arrives, I think, but I appreciate the compliment, nonetheless.

At the check-in table, I’m embraced by classmates who were former cheerleaders. I was one of the nerds. But there are no more cliques, none of that awkward adolescent silliness that could be so painful 40 years ago. Thank goodness. We’ve all grown up. Everyone is gracious and simply glad to be here.

I find two of my old friends, one who lives just an hour up the river and one who has travelled all the way from Montana. We hug and kiss and take pictures, find a table together for dinner and begin to share stories.

My Montana friend, vivacious as ever, has the scoop on many of our old gang’s whereabouts. As I mingle with other classmates, I discover more details. We are teachers, doctors and lawyers; social workers, nutritionists and psychologists; artists, writers, sales reps and consultants; marketers and massage therapists. One classmate is a government affairs director for nuclear power plants. Another frames fine art in Manhattan. A third got in on the ground floor of Pay Pal. A fourth overcame the stammer that plagued him throughout his youth and is now a leading speech therapist.

There have been miracles—one friend who was diagnosed in college with a deadly form of Hodgkins Lymphoma beat the disease, married and has raised a family. And there have been tragedies—17 of us are dead, nearly 10 percent of our small senior class. One friend couldn’t join us because he was rushing to see his sister, dying of cancer. Another shares that her beloved husband died in the World Trade Center on 9/11. “I’m so grateful for the years we had together,” she says.

I chat with the younger brother of one of our classmates (this reunion includes five groups of alumni) and inquire about his family. He tells me his oldest sister is in hospice, dying of a rare disease. He hesitates, searching for the word: “Sclarodarma?”

I catch my breath. “You mean scleroderma?”

“That’s it,” he nods.

“I have that, too,” I say. “It takes different forms in everyone. I fully understand what you’re going through.” But this feels almost foolish. I don’t really know. I’ve been lucky. I have the slow moving version, limited systemic sclerosis. Compared to what she’s dealing with, this is a walk in the park.

We talk some more. She was diagnosed three years ago. The disease is knocking out her systems, one by one. I try to empathize. We change the subject and discover a shared passion for trees and urban parks.

The program starts. We commemorate those who have passed. I join in a hearty rendition of our school song. We eat and share and laugh and philosophize about how, at this point in our lives, we’re just glad to be here, discovering self-acceptance, whatever our circumstances.

I leave before dessert to drive an hour to Emily’s college for an overnight stay. We gab until 1:30 in the morning. As I try to fall asleep, I find it difficult to absorb everything I’ve heard and seen.

Driving home the next day, surrounded by glorious fall foliage, I think back to the older sister dying of scleroderma. She was a few years older than me, beautiful, with long blond hair. We were in band together. I remember her one autumn afternoon, standing in formation on the football field during marching band practice, waiting as our director barked directions. She stood ramrod straight in an elegant black dress with geometric trim, reading a thick book balanced in her hands. I admired her and wished I could look like that.

How is it that we are now joined by this dreadful disease, but she lies dying and I, I am driving home from a wonderful weekend renewing friendships and sharing with my daughter? I think of the High Holidays liturgy, Who shall live and who shall die. I think of the Festival of Sukkot just ending, with its message of gratitude and abundance amidst the transience of life. I drive toward home, past the Berkshires, as trees the color of flame release their leaves beneath silver skies.

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.