Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Blizzard Warning

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The sun is shining, the snowplows are revving and Al is raking two feet of snow off our kitchen roof as I write. Twenty-four hours after Nemo blasted through New England, our street is a canyon of bright white snowpack amidst four-foot walls of plowed drift. Evergreens bow, weighted by mounds of melting snow, while barren hardwoods stand tall and unbroken, spared accumulation of Nemo’s fine, cold powder.

We went to bed Friday night listening to the wind howling overhead. The snow was blowing sideways near midnight. I watched it from our bedroom window, swirling and streaming in the streetlamp’s golden glow—reassurance that the power was still on.

Around five I awoke, unable to go back to sleep. Overnight, true to predictions, the snow had piled more than two feet high. Al’s car, parked in the drive, was half-buried. Only the  yellow cap of the fire hydrant at the front of our lawn was visible. The wind drove snow at a 45 degree angle. Flakes swirled and danced like millions of down feathers in a colossal pillow fight. And still, the power was on.

Once again, we got lucky. Through Tropical Storm Irene, through the 2011 Halloween Surprise, through Super Storm Sandy, through severe ice storms of recent years, and now through Nemo, we’ve had light, heat and hot water. I’m almost afraid to state it and tempt fate.

This has become my constant fear, whenever I hear news of a major storm’s approach: What if we lose power? With extreme weather the new normal, it is now inevitable that strong winds plus precipitation on a large scale will cause massive power outages that can incapacitate for days and even weeks.

At its peak, Nemo knocked out power for 650,000 families and businesses in Long Island and up the New England coastline; that number was halved by Sunday. Still, losing power in a record-breaking winter storm means waiting in the cold for your turn on the utility company’s long punch list. This is what scares me.

Because of my Raynaud’s and poor circulation in my hands and feet, I simply can’t stay in a cold house for long. Well before the pipes might freeze, I will go numb. We have yet to invest in an emergency generator, but if the extreme weather patterns persist, this may become a necessity in a few years.

I hate thinking this way. I used to love snow as a kid. A storm like Nemo would’ve had me itching to run outside and build a snowman, or flop on my Flexible Flyer to slide down the hill in our back yard. I would’ve played outdoors until the snow turned blue at dusk and I lost all feeling in my fingers and my teeth chattered. The next day I would’ve raced out to snap icicles from the eaves and slurp them like popsicles.

As Nemo kicked into gear on Friday afternoon and I walked Ginger in the mere two inches that had accumulated so far, I watched children a few houses up the street slipping and sliding in the snow. It looked like fun.

I chose to live in New England because I love the full four seasons, including winter’s magical frosting of the landscape. I don’t want only to think of weather in terms of the risks involved. Storms are part of Nature’s cycle.

And yet. Now every significant storm has an ominous edge. There were plenty of online jokes about naming this one Nemo, moniker of the little orange-and-white clown fish of Disney’s animated pantheon. But Nemo was also the name of the vengeful, tormented submarine captain in Jules Verne’s 19th century science fiction novels, Twenty Thousand Leagues Under the Sea and The Mysterious Island.

In Verne’s world, Nemo raged against oppression and British imperialism, sinking war ships and rescuing castaways, living by his own law under the seas. The storms that now confront us are Nature’s payback for humans’ destroying carbon reserves and wasting the planet. What we’re experiencing is just a taste of even more severe weather to come, if we fail to act.

I want to believe that we humans are creative, adaptable and capable not only of coping with the severe consequences of global climate change that we’ve brought upon ourselves—but also able and eventually willing, collectively, to reverse the trend, at least for our grandchildren and future generations.

Home generators may be the immediate response to ensuring personal safety during extreme weather. But if we’re really serious about reversing global climate change, we need to take responsibility for much more than our own homesteads. And we need to start now.

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.

Grieving

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I had a blog post in mind for today, one that has been incubating since the middle of last week, as is usually my practice. But it can wait. After the Friday massacre of so many innocents at Sandy Hook Elementary in Newtown, Conn., it seems self-serving to write about what’s going on in my own little corner of the world.

Since last Friday, as more details have emerged about the shooter and his victims, about the heroism of those who sacrificed their lives trying to save more children, about how many rounds of ammo the shooter had in his cache, about how many more might have been killed if the police hadn’t arrived when they did, I have been struggling, like so many, to grasp fully what happened.

One morning you send your first grader off to school, and then. Gone. Murdered. No, slaughtered with a semiautomatic. Along with dozens of classmates, teachers. The images don’t go together. The pain is too great, too hard, even from a distance. My heart hurts. My prayers of comfort go to all of those who lost loved ones. But that seems inadequate, even still.

As President Obama spoke to the Newtown community Sunday night, you could hear a baby cooing somewhere in the audience. No one shushed it. Perhaps that was the most profound response to the nightmare.

Even in the midst of such tragedy, we are resilient. The will to live and heal and flourish, despite overwhelming loss and pain, is powerful, thank God. More powerful than the will to destroy.

And yet. As the days go on, as we return to our routines, will we maintain the focus and fortitude to ensure that our schools and malls and movie theatres are safe places for our children? Safe for all of us, regardless of social class, race, ethnicity, religion, sexual preference, physical disability, health challenges, whatever sets us apart?

President Obama issued a challenge. We need to change. The time is now. Yes.

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.