Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

resilience

Defrosting

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Was it really just last week that we emerged from the deep freeze? Monday afternoon, as dusk was settling, I took Ginger for a late walk and didn’t mind her noodling around, sniffing every other lamppost. This would have been unthinkable a week ago, as the ominously dubbed Arctic Vortex clenched half the country in its icy swirl.

Early last week, as temperatures hovered in the single digits, I barely emerged from my home. If Ginger wanted out, I opened and shut the door as quickly as possible, to avoid the frigid air. We switched over from our heat pumps to our oil burner, since the pumps don’t function efficiently below 10 degrees. My skin dried out. My digital ulcers erupted.

Now, following a delightful weekend in the 50s, my fingers are barely beginning to heal again. A new shipment of fabric bandages (I favor Coverlets, only available by mail order, for their softness and flexibility around my sensitive fingertips) arrived on time, thank goodness, because I was running through boxes of 100 far too fast.

With supplies replenished (I order 1,000 bandages at a time), I’m steeling myself for the next arctic onslaught. That’s right, it looks like we’re going back into the meat locker. The National Weather Service’s 14-day outlook predicts lower than normal temperatures for all of us east of the Mississippi. If you live in the other half of the country, you’re in for warmer than seasonal temps.

According to one hyperventilating summary of upcoming weather that I read, we could be dealing with icy cold into the beginning of February. The author quipped that it will be like those winters your grandparents remember.

This thrills me to no end. But then, I remind myself, this is New England, not the upper Midwest, where temperatures dipped to 40 below over the past few weeks. (My sincere condolences. Really. I cannot imagine surviving there.) Our favorite saying here is if you don’t like the weather, just wait a minute.

Time to get ready. I need to get my well-worn sweaters to the dry cleaners, so they are fresh once again. I need to drive my charcoal grey Prius through the car wash, to rid it of a thick coat of road salt that makes it looks as if someone clapped erasers all over a chalkboard (does anyone use these anymore?), before it gets so cold again that the water will freeze the doors shut.

Most importantly, I need to get my mind wrapped around the fact that I cannot do anything to predict or prevent extremely cold weather. It doesn’t really help to read 14-day weather outlooks, because it will all change, anyway. There is no way to know how whatever freezing cold will impact my hands further until it arrives.

A century ago, the great Antarctic explorer Ernest Shackleton kept his men alive for two year when their ship, the Endurance, became ice-locked and eventually sank on an aborted expedition to traverse the continent. One of the keys to his leadership success and their survival was to encourage his men to play—igloo building contests, dog sled races, singing.

Maybe that’s the best way to prepare for the next deep freeze—tune out the weather forecasts and tune in some great music.

Photo Credit: Sharon Mollerus 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.

Wake-Up Call

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I tried an experiment this morning: Eat a bowl of oatmeal and craisins without doing anything else—no writing, no reading, no New York Times crossword puzzle, no checking email or Facebook or surfing the web on my iPhone, no planning the week’s menus or my work schedule. Just focus on my breakfast.

This proved a challenge. I only partially succeeded. (As soon as I realized I had the lead for this blog post, of course, I had to take a picture of my cereal bowl and tea and the little meditation bowl that a friend gave Al for the holidays). But for a few minutes, I was able to focus, and noticed several things:

  • I love our kitchen. We bought our house in part because of the skylit space over our kitchen table and the view of the rock garden out back. It’s very soothing.
  • I taste more when I’m paying attention to my food. So often I’m thinking of a million other things when I eat that I’m surprised when I’m finished. This was a nice, warming breakfast.
  • There are annoying new floaters in my right eye that have been bugging me for over a week, now—really, sometimes I think I see a bug and it’s a floater.
  • I have to consciously check myself from going off into my head and starting to compose—this blog, a worry-story about what might go wrong today, a trail of images about my long to-do list.

I will try this breakfast meditation again, perhaps not every morning (hard to break the habits of an inveterate multi-tasker), but at least two mornings a week. It’s part of my ongoing effort to be more present in the moment.

My lack of presence was stunningly obvious one evening last week when I was driving home from Boston with a plan to stop at the supermarket. I turned onto the correct street, but then, instead of going to the store, ended up at the gas station right before the store. My tank was three-quarters full. I had no need for gas. But I didn’t realize my error until I started pumping.

I made it to the market afterward and picked up the correct groceries. But I was a bit shaken by how I’d been just too absorbed in too many concerns taking up too much space in my head to go directly there, in the first place. Maybe it’s aging. Maybe I need more sleep. Maybe it’s just one of those silly things that happens sometimes, when you go on automatic pilot without realizing it.

But it’s also the second time in a week that I’ve made a similar error, intending to do an errand at one store and landing at another, nearby, because I was thinking too much about other things and not paying attention to where I was going.

Conclusion: As 2014 arrives, my big goal for the year is to stay more in the present, less in my head, where anxieties—about health, family, finances, safety, what the future might hold—suck up more energy and effort than they are worth, especially since 95 percent of the stuff I conjure up never happens, anyway.

One of the pitfalls of being a storyteller. Better to pour it all into essays or fiction when I’m safely at my computer and not behind the wheel.

For you, dear reader, I hope you avoid your own wrong turns this coming year. May your 2014 bring you inner peace, good health and healing, fulfillment and prosperity, and breakfasts worth savoring

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.

Of Traffic Cones and Lobster Traps

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‘Tis the season for parking space bouts.

After about a foot of snow accumulated across Massachusetts last week, Boston streets were a mess. One guy in Southie clocked an older neighbor after they got into an argument over a parking space. It seems the older guy had paid someone to shovel it out, and then, later that day, the younger guy took the space. The older guy “allegedly” cursed and spit at the younger guy, and the younger guy “allegedly” punched him in the face, landing him in the hospital. The younger guy was charged with assault and battery on someone over 65.

So much for civility. (Okay, kids, let’s remember to keep our hands to ourselves and use words to express our feelings.)

To warn off interlopers, there’s a venerated tradition in these parts of marking your shoveled parking space with traffic cones, old chairs, garbage cans or even lobster traps. Technically, this is only legal in Boston for 48 hours after a snow emergency (not the case last week).

From police reports, it’s unclear whether the older guy staked his space, regardless of parking regulations. Of course, if the younger guy had had any common sense or a drop of consideration, he would have known better than to park in a neatly cleared spot in front of his older neighbor’s home. There were undoubtedly better ways to resolve the dispute. On the other hand, it was a open parking space on a public street.

Which is why I’m intrigued by this story and have taken you on this long digression to make my point—boundaries in relationships are often murky, unless we strive to be clear about our personal limits, intentions and expectations.

Finding an appropriate way to do that without resorting to blows, abusive language or other offensive behavior is an essential life skill. Especially for those of us managing a chronic disease, particularly during the often stressful holiday season, setting clear boundaries to maintain and protect our health is crucial for well-being.

I have gotten better at this as I’ve lived for decades with scleroderma. I try not to yell or scream or manipulate others to get their sympathy when I’m feeling crummy or scared. I strive to set realistic limits and make my needs clear.

To wit, I only attend holiday gatherings that I really want to attend. I have learned to decline requests, politely but assertively, for social commitments that would drain my energy. I am (slowly) learning to ask for help with cooking and scaling down overly elaborate menus that I no longer can prepare (a reverse setting of boundaries with my ego, which still pushes me to be Superwoman). I avoid malls as the holidays approach and do all my gift-buying online. Whatever the time of year, I am coming to accept that I need to set limits with how much I can realistically accomplish in a day or a week in order to maintain my health—physical, mental, emotional and spiritual.

None of this is easy. I still sometimes resent having to set these boundaries when I’d rather be able to do more. But it is what it is. And there are advantages to setting out those virtual traffic cones and lobster traps, reminding myself and clarifying for others that I need to do less, to preserve my health and free up mental and emotional space to appreciate what’s right in front of me.

As I write, it’s drizzling outside my office window. Temperatures hover just above freezing before more cold air blasts through Massachusetts later this week. Not much of a white Christmas for celebrants. But at least there should be plenty of street parking.

Whatever your holiday practice, I hope your festivities are filled with joy, health, well-mannered family gatherings and clear communications about what you’re up for and where you need to draw your own boundaries. Best wishes to all, and be well.

Photo Credit: onesevenone 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.

Biker’s Paradise

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In three weeks, it will officially be winter. But January temps arrived here last week, way too cold, too soon. Mornings and evenings in the teens, bitter windchill, the works—only the snow hasn’t arrived, yet.

All of this made me realize that I need to solve a big problem I’ve been ignoring—I need to replace my very worn-out, favorite, red-suede, insulated winter gloves. The holes in the right hand can’t be mended and are growing bigger with each wearing.

Now, for most folks, this is not a big deal. Especially at this time of year, stores are well-stocked with rainbow displays of gloves of all different materials, styles and warmth. But my fingers are much shorter than an average size 7 glove, what I’d wear if I had normal hands. I don’t.

Due to complications with severe Raynaud’s and my scleroderma, my fingertips have all resorbed to stubby nubs. The longest finger on my right hand is only 2¼ inches long. I often have several fingertips bandaged to protect my ulcers. So normal gloves always have about an inch of extra fabric at the top that flops around and makes it hard to pick up things. Also, the fingers are often too narrow to accommodate my bandages. Children’s gloves are too tight.

I lucked out with those red gloves several years ago at a random fundraiser trunk sale. They have Thinsulate lining and roomy fingers that are shorter than standard gloves. No tag. No way to trace their origins.

So, replacing them called for some creative problem solving. I turned to the Internet and googled “women’s gloves short fingers.” At first, all I found were gloves for cyclists without fingertips. I kept looking. There were sites for outdoor adventurers, but those gloves cost a fortune. Custom-made gloves were out of the question.

Then I discovered sites for bikers. A goldmine. It would never have occurred to me, but, of course, bikers need warm gloves for cold weather—sturdy, insulated, flexible leather gloves for gripping motorcycle handles.

The idea of walking into a biker shop, however, felt a bit intimidating. I’m sure I’m guilty of stereotyping, but I’m about as far from a biker as you can get. So I did some more online search and found a great biker retail store near Boston. They sell very affordable leather gloves in a range of sizes, with wide fingers that look slightly curved. Perfect.

I could have emailed, but I decided to call. A pleasant woman named Melanie answered. I explained my dilemma, that I have very short fingers and wasn’t sure what size to order.

“Oh,” she said, “you’re just like me! I have short fingers, too. I hadn’t thought about gloves, though, because I put my bike away for the winter.”

I confessed I wasn’t a biker and described the details of my hand issues.

“You’ve come to the right place,” she said. “Biker gloves come in all different sizes, for a great price.” This all made perfect sense. A real niche market.

She offered to go try on some gloves and report back. We determined that her tallest finger is about a half-inch longer than mine. A few minutes later, Melanie returned to the phone.

“I’m trying on this pair of smalls, and they are quite comfortable on me,” she said. “You might even try the extra-smalls.”

“Are you sure they’ll be wide enough across the palm?”

“I have very square palms,” she said. “Where’s that measuring tape?” She determined that her palm was 4½ inches across to the outside of her thumb joint.

“Okay, let me check,” I said. We were both laughing at this point, comparing these intimate details of our physiognomy. My measurement was about a half-inch shorter. The extra-small sounded like the right size. She assured me that the style runs to a triple-extra-small and likewise in the other direction, and that they take returns and exchanges.

I thanked her for her help and placed my order online. The gloves should arrive in a few days. If they don’t fit, I’ll drive to the store in my Prius, meet Melanie and find the right pair. I may be an unusual customer, but then, hands are hands. And it’s an adventure. Who would have thought my scleroderma would land me in a biker’s paradise?

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.

Let There Be Light

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This time of year, around 7:30 in the morning, the sun paints a tipsy exclamation point on the wall above our bedroom radiator. It glimmers, stretches and slides on a downward slope away from the window, toward the radiator’s far corner, before vanishing within the hour. I welcome the annual arrival of this narrow shaft of light—a reminder that, even as the days are growing far too short, the winter solstice is barely a month away.

Sunbeam_bedroom_11-25-13I hang onto this promise. As soon as we switch the clocks back and it starts getting darker by 5:00 and then 4:30 and now 4:15, I feel as if everything constricts. It takes me nearly a week to get used to the relative time change. Then I start marking time until December 22—the first day of extra sunlight.

My other way of reassuring myself that winter’s heavy darkness will, eventually, lift once again is Hanukkah. The eight-day Jewish festival of lights, Hanukkah is celebrated by lighting one new candle each evening, just after nightfall. The candles are a reminder of miracles—how the Maccabees overthrew Syrian Greek rulers who had desecrated the Temple in Jerusalem, the Temple’s restoration and rededication, and how a single cruise of ceremonial oil burned in the Temple for eight days instead of just one.

Normally, Hanukkah falls midway in December, not far from Christmas, right around the shortest day of the year. With the addition of each new candle in our eight-branch hanukkiah, I feel the light returning.

This year, however, Hanukkah starts the night before Thanksgiving—an anomaly caused by the particulars of the solar-lunar Jewish calendar. This coincidence of holidays won’t occur again for another 70,000 years. That is, assuming humans are still around to mark the passage of time, the earth’s elliptical orbit around the sun and reasons to be grateful.

So what to make of the candlelight when I know the days are still getting shorter for the next few weeks? Delayed gratification? Reassurance that even as the temperatures here in New England have plummeted well below freezing at night, even though it’s still November and not yet January and I’m bundling up in layers and layers to stay warm, that the earth will soon reach its farthest distance from the sun and begin spinning closer once again?

Maybe I should focus on miracles. Gratitude generates its own candlepower. We have a warm house. I have enough warm clothes to deal with the weather and my Raynaud’s. When I switch on a light, electricity flows through wiring into an energy-efficient fluorescent bulb to brighten the room (even if it takes a few minutes). No horrible severe storms, yet, out our way. (Probably shouldn’t mention that one. Don’t want to jinx it.)

Then there’s the annual miracle of that narrow shaft of light each morning in our bedroom, November’s sunny greeting. Yes, it’s cold out, it seems to say. But the world keeps spinning. Gravity holds you firmly to the ground. There will be more sunlight soon. Minute by minute. Second by second. Stay the course.

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.