Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Waiting for Sandy

· · 5 Comments

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

· · 2 Comments

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.

Don’t Do Anything Stupid

· · 2 Comments

It’s Sunday morning, overcast, nippy. I’m up at 6:00, most definitely not my favorite time to rise. But today’s the day that Al is running a 5K obstacle course race with his hospital co-workers at a track out in Western Massachusetts, and we need to be there by 8:30.

Al informed me about this a few months ago when he and his fellow social workers decided this would be a great team building activity, plus a good way to raise some money for a local charity, while they were at it. I didn’t give it much thought. As a marketing director, for years I would take my staff out to all kinds of unusual places—the Arnold Arboretum, a glass-blowing studio, a youth concert by the Boston Symphony—to strengthen us as a collaborative working group. So the basic idea sounded fine to me.

That is, until Emily came home for the summer from college and looked at the race track website. “Mom, have you seen what he’s supposed to do?” she asked, incredulous. I had to admit that I hadn’t bothered to look. I was in denial. But the man is going to be 62 at the end of October. He has a pacemaker. We agreed that she would urge him to do more than his usual morning workout to get in shape. “He’ll listen to you,” I said. “He’ll just ignore me.”

So she did. Al started swimming after work. Emily went back to school in early August.

A few weeks later, Mindi came home from Israel for a month’s visit. “Mom, have you seen what he’s supposed to do?” she asked, after checking out the website. We agreed that she would push the pace when they hiked up Mt. Monadnock that week. “He’ll listen to you,” I said. “He’ll just ignore me.”

So she did. They made it to the top of the mountain in good time. Al started running after work, and Mindi went back to Tel Aviv in mid-September.

The week before the race, he was running a full 5K around our neighborhood without stopping. I’d resigned myself to the fact that he was going to go through with it and that the weather forecast was crummy—chilly, with a chance of showers.

We’d discussed the possibility of my staying home, because we were both concerned I would get numb waiting for him to finish. So I decided to find a Starbucks nearest to the racetrack, in case it was raining or too cold for me to stand outside for hours. I finally checked out the website to get the address. And freaked out.

This was no ordinary obstacle course. You had to crawl in muddy water under strings of barbed wire. You had to hop from pylon to pylon over more muddy water. You had to squirm through dark, wet tunnels. You had to run up and down mucky terrain. You had to jump over a fire pit.

When Al came home Friday night, I said we needed to talk. We sat in the living room and I let loose.

“Have you looked at the 5-week training program they have on the website? This isn’t just about running. It’s cross-training! If I’ d realized what this was all about when the girls warned me, I would have tried to talk you out of it. You could really get hurt!”

Al said nothing. After nearly 28 years of marriage, he knew enough not to interrupt me when I was on a tear.

“I don’t care how cold or rainy it’s going to be on Sunday, I’m definitely coming with you. What if you sprain an ankle? What if you break a leg? What if you get a concussion, I thought. What if you have a heart attack? How will you get home?”

He kept listening, his face frozen in a tight grimace.

“I know how important it is for you to do this, I get it that you want to prove to yourself you can, and I know you’d never listen to me if I tried to talk you out of it. So I want to support you, but you have to promise me you will skip any of the obstacles that you can’t do. Don’t be a macho hero!”

“I won’t do anything stupid.”

“Okay, but what does that really mean?”

“It means I won’t do anything stupid!”

We went back and forth for a few more minutes. Al suggested that maybe I should stay home, because it was going to be too cold for me. No way.

“If you’re going to be stupid enough to do this, than I’m going to stupid enough to stand there in the rain and watch you and make sure you get home okay!” He agreed. Truce.

*       *      *

I take on the elements dressed in jeans and an old short-sleeved cashmere turtleneck, under an old long-sleeve cashmere v-neck, under a fleece vest, under my mid-weight down winter coat. I am armed with my fleece wrist warmers, gloves and a hat, and I have my umbrella. I look ridiculous, but I don’t care. I can’t take a chance on my Raynaud’s triggering for the next three hours.

As we drive out on the Mass Pike, the cloud cover is lifting. There are even a few patches of blue over Berkshire foothills spackled crimson and gold.

At the track, we find Al’s co-workers—three trim women, all at least half his age. Everyone‘s in high spirits as they don their purple tees with the hospital logo and their names on the back. A couple of athletic-looking boyfriends join the team, too.

Music pumps from two huge speakers. Other running teams sport everything from multi-colored unitards to chartreuse tutus, from Batman and Wonder Woman costumes to princess tiaras and centurion helmets.

To get to the starting gate for their 10:30 race, everyone has to climb over a four-foot-high plywood barrier. Al tells me later that he thinks the guys ahead of him are just showing off when they jump the wall. Then he realizes he actually has to get over the thing.

Smoke fills the air beyond the starting gate. An announcer juices the crowd. A siren blasts. And they’re off.

I find my way to a good vantage point midway through the course, a spaghetti-like dirt trail that winds up and down, back and forth through the muck. And wait. After about 20 minutes, I catch sight of part of the team running up the far side of the track. But no Al. A few more minutes pass. Then I see him, trudging slowly up the incline behind his young, spry supervisor. She pauses until he catches up. Okay, she’s making sure he’s doing all right. Good. I snap some pictures.

After another ten minutes or so, the team reaches the muddy sinkhole in front of me. I yell encouragement and snap some more shots. Al pumps his fist in the air as he wades through the guck. He looks exhausted, but he seems to be having a good time. I click away as they all hold hands down the giant slide into a mud hole, as they roll over red-and-white poles laid across muddy water, as they slog up and down.

When I can’t see them anymore, I head to what I think is the final obstacle, a huge pit of muddy water before a steep, gloppy incline. The sun comes out. I unzip my coat and vest and put on my sunglasses. Guys do cannon balls, flips, belly flops. Most of the gals just jump and wade through. One woman in a tutu drags herself to the side with an injured leg and is quickly picked up by the paramedic crew. But no Al and company. I keep watching and waiting.

Suddenly, there’s a hand on my shoulder. It’s Al, grimy and smiling. “We’ve been looking all over for you! We finished a while ago!” Oh no, how could I miss it! They crossed the finish line together, holding hands, he tells me. We head back over so I can take his triumphant portrait.

Al is ecstatic. “I really did it!” he beams. He gets his free beer and we grab some veggie burgers. We say our goodbyes and head to the car. On the way home, he tells me more about the obstacles. He did every one, except the pylons. Too much. So, he kept his promise.

“It was hard,” he admits as we drive back east on the Pike. “But the anticipation was worse than the actual race.” I agree. You never know what you’re capable of, even when your body doesn’t work so well anymore. Unless you try.

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 Waiting Game

· · Leave a Comment

I’m late for my doctor’s appointment. Per usual, I tried to finish just one more thing before I left the house. Then I hit road construction on the main thoroughfare between home and the medical center. By the time I have parked and found the right office inside the cavernous hospital, it’s a good 15 minutes past my scheduled arrival. And the doctor is running on time. Uh-oh.

Usually, it’s the other way around. But I get lucky. The waiting room is empty and my appointment doesn’t get bumped. I have my Kindle along, but I get distracted by the waiting room flat screen TV. It’s an episode of The Doctors, featuring a team of attractive specialists answering studio audience questions about their health. The ER doc wears a pair of blue scrubs and the others, white lab coats. The pediatrician is responding to a young woman’s query about the birth mark on her chest when the nurse calls me into my appointment.

Hoping to shave a pound or two off the digital scale readout, I take off my coat and shoes when she weighs me. We review my meds and allergies. She takes my blood pressure and temperature. We chat about the weather. As she leaves the room, I check the magazines in the wall rack. This exam room could use some better reading material—there’s a Vermont tourist glossy, a couple of trade health publications and an ersatz women’s magazine. I flip through its pages and scan the list of recommended books, wondering why it’s such a struggle to get published when all this dreck makes it into print.

My doctor is prompt and pleasant. He’s an infectious disease specialist, and we’re reviewing the plan we made over the summer to manage any future infections in my finger ulcers. After another year of on-again-off-again antibiotics, it was time to get pro-active. We marvel at the fact that I’ve had no infections since I saw him in June. I joke that all the germs have been scared off by his presence. He laughs. “I wish it were so,” he says.

We review what to do when the next infection hits. It’s a foregone conclusion. The only question is, how soon? There’s a piece of calcium migrating toward the surface of my right thumb. It’s causing me difficulty squeezing a tube of toothpaste and picking up cups. When it finally breaks through the skin, perhaps in a few months, there’s a high chance of infection. And, as the weather gets colder, my skin breaks down and is at greater risk, anyway.

We agree that I don’t need a follow-up. I’ll just call him when the next infection hits. I have the necessary antibiotics at home and know when and how to use them. He trusts my experience and my judgment. I thank him and say good-bye, for now. As I walk out through the waiting room, Family Feud contestants cheer and clap before the commercial break.

Leaving the hospital parking lot, I wait in a line of cars. It’s almost 3:20 and the shift is changing from days to evenings. On the drive home, I ease my car around the exposed man-hole covers that have turned the street under construction into a slalom course. I get home just over an hour after I left, pretty good for any doctor’s appointment—especially when I was the late one.

At the back door, Ginger is waiting patiently for my return. The sun casts long shadows. My right thumb twinges as I set down my Kindle, little green medical notebook and cell phone on the kitchen table. It’s almost time for our walk.

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.

Here, But Not

· · Leave a Comment

I’m writing Saturday night, as the parsnip-pear soup simmers on the stove for Rosh Hashanah dinner on Sunday. And when this post publishes Tuesday morning, I’ll be getting ready to go to synagogue for the second day of the Jewish New Year.

In our wired world, our words can travel to their appointed destination on schedule, no matter where we happen to be or what we happen to be doing. So even though I’ll refrain from work and not touch my computer for the length of the holiday, it will seem as though I’m online, doing business as usual.

Here, but not. The Internet, email, texting, smart phones—all create the aura of being there, regardless of whether we’re actually present.

The irony, of course, is the more we communicate through the electronic ether, the less we’re present in the world around us. Everywhere I go, I marvel (to put it politely) at how many people are constantly texting or talking on their cells, noses buried in those little screens, never noticing the sidewalk or the sunshine or the car that’s making a left-hand turn in front of them.

And I think about this often, because time takes on a different meaning when you are living with a chronic disease. Minutes, hours, days are more precious. With each passing year, I feel a greater need to experience each day fully and do something meaningful with my writing.

Staying present, really present for the people I love, appreciating whatever each day brings, even the difficult, annoying parts, takes focus and determination. I can multi-task as well as anyone, but I no longer think that’s a great way to work or live. Better to simplify and pay attention to what’s in front of me than to spread myself too thin by trying to do too much, which always leaves me worn out and aggravated and struggling to slow down my brain at night so I can sleep.

Case in point: This past Friday I planned to drive to a supermarket about 20 minutes from home because they have excellent produce and I needed a lot of fruits and vegetables for my holiday menus. I left later in the day than I’d intended, trying to finish one more thing before I quit working, and decided to take a different route that I thought would be faster in mid-afternoon traffic. But, of course, I got lost, had to ask for directions, and spent 45 minutes getting there, instead.

I was totally annoyed with myself. Then I decided to let it go. There was no point getting aggravated because I wasn’t going to get there any sooner. As I drove, just watching the road and surrounding scenery, I got an unexpected insight about work that never would have occurred to me if I had continued multi-tasking and forcing my brain to track too many details, as I had for most of the day.

I spent the next hour at the market, focused on picking the best parsnips and pears and other savory produce, weighing and labeling each bag with its price, and gave myself a pat on the back at the check-out line when I discovered I’d actually stayed within my budget.

Of course, now I’m back to multi-tasking, writing while the soup cools on the stove. But it’s filling the house with wonderful smells, and when I wrap up this post, I’m going to enjoy watching the food processor transform the chunks of cooked fruit and vegetables into a swirling, golden mass. Then I’m going to bake the challah that’s quietly rising. And then I’m going to get some sleep.

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.