Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

On Turtles and Frogs

· · 4 Comments

When it comes to check-out lines, I’m slow. Really slow. Or so it feels when I’m standing at the register, fumbling to remove cash and slide coins back in my wallet without spilling them, fiddling with the receipt, finagling my wallet back into my purse.

If I’m shopping with one of my daughters, I’ll just let her handle the money so we get through the line quicker. If I’m shopping with Al, he takes care of the transaction. But since I usually do errands by myself, I’m often in this state of fumbling and feeling like I’m holding up the people behind me.

Lately, I’ve taken to hauling my purchase, change and receipt to an open counter where I can take my time to put everything back together. The other day I was in a store, arranging my stuff at an empty checkout counter, when the cashier at the next station asked if I needed help with an exchange.

“No,” I said, “I’m just getting organized.” To which she replied, “I wish someone would do that for me!” We laughed, and I felt better.

Some of this angst about being a slow-poke because my hands are clumsy is in my head. But I’m not imagining people’s impatience in the line behind me, either. We’re a society obsessed with speed.

When I was a marketing director for a dozen-plus years at a small New England college, I would always give my new employees a plastic turtle. Then I’d explain Herwitz’s Turtle Principle:

  1. Take the time to do the job right the first time, or you’ll end up spending twice as long fixing it.
  2. If our internal clients drive you crazy, draw into your shell and let it roll off.
  3. Pace yourself through the day, including lunch and breaks to clear your head. You’ll be more productive and keep your sanity.

Everyone loved these guidelines and our little department mascots, and many of my staff took their plastic turtles with them when they moved on to their next career step. While I’m sure it sounded odd and downright seditious to some of my colleagues who wanted us to jump to meet their demands, whenever we followed the Turtle Principle, we were highly productive, and whenever we succumbed to pressure and rushed to complete a project, we’d screw up.

Problem was, I had a really hard time finding those plastic turtles. I’d search in toy stores and party stores to no avail. It took creative thinking and serendipity to locate them. Plenty of plastic frogs, but few turtles.

Not surprising that the frogs outnumbered the turtles, when you think about it. We’re always hopping, running, chasing to keep up with
everything we try to stuff into a day. So often I hear people complain how busy they are, how exhausted they are—but the complaint often veils pride in accomplishment. How busy you are is also a measure of success. If you’re busy, you must be doing a lot of important things, right?

I get caught up in this cycle, too. Which is why I hate to waste time fumbling at the check-out counter, and why I’m so conscious of holding up people in line behind me.

But, really. What if we all took a few more minutes at the check-out line to stop, organize ourselves and chat with the cashier? Turtles are among the longest-lived creatures on the planet. In this 5-Hour-Energy, instant-download, five-minutes-ago-is-old-news world of ours, scleroderma or no scleroderma, I’d rather be a turtle than a frog.

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.

Legacy

· · 6 Comments

Last Wednesday, March 21, was Johann Sebastian Bach’s 327th birthday. I know this because I was listening to a J.S. Bach extravaganza on my satellite radio while driving between home and business meetings and doctor’s appointments all day.

I clocked a lot of miles and heard a lot of Bach. Though baroque is not my first choice in classical, this proved a blessing. His music provided the perfect balance to the necessary and supportive but exhausting experience of seeing my rheumatologist at Boston Medical Center. I love all my docs at BMC and here at home—they are wonderful, dedicated physicians. But whenever we talk in great technical detail about symptoms and medication and diagnostics and what may or may not happen next, I’m always drained.

Scleroderma is so complex, involves so much to monitor, that when we discuss my latest issues, much as I probe and want to understand the minutiae, there’s a part of me that doesn’t want to know, that just wants to treat it as the white noise in my life, annoying, in the background, to be ignored.

After my appointment, west-bound on the Mass Pike, as I sorted through our conversation, on came Bach’s Violin Concerto in A Minor. And I remembered playing it. Years ago, in high school. I could still feel the trace of fingering in what’s left of my left hand’s fingertips. As the soloist began the poignant second movement, I recalled the phrasing, how I had loved to bow those notes. Bach’s haunting, wistful melody has been cycling through my mind, since.

So here I am, more that three centuries after Bach composed his masterpiece, and the music speaks to me. And I’m grateful. And awed by the way that a great artist’s creation still resonates, feels fresh, inspires insight, so many years after he set down his pen.

And I wonder, what will I leave behind? I wrestle with this question often. It will be my 58th birthday in a few weeks. I don’t feel old, despite the way my scleroderma gnaws at me. But I do feel that each day is more precious, that I don’t want to waste time any more doing things I don’t want to do. And that I want my writing, my art, to be my main focus.

This is what gets me out of bed in the morning, even on a day like this when I’m still tired after a full night’s sleep and feel like I’m moving through a vat of glue. Writing. Putting one word next to another, one sentence after another, to see where it leads.

Bach described his art this way: “The aim and final end of all music should be none other than the glory of God and the refreshment of the soul.” He reached his lofty goal note by note. I can’t say that I have as clear a vision for my writing, but I know I’ll discover it if I just keep at it, word by word by word.

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.

Hula Finger

· · 4 Comments

Decades ago, when scleroderma first attacked my hands, my right index finger began to droop. Over the course of several years, it stiffened into a hooked flexion contracture, bent to an immobile 100-degree angle.

To me, it looked like a claw. It was ugly, hag-like. I hated it. I was constantly smashing my bent knuckle into drawers and cabinets whenever I reached for something. It hurt when I shook hands. It was an embarrassing deformity.

The hardest piece was that it had been my favorite finger, enabling me to maintain deft control of pencils when I drew, of needles when I sewed, anything that involved fine motor coordination. I had talented hands with great kinesthetic feel, and my right index finger was the most talented of all.

As the risk of permanent knuckle ulcers and infection grew, I decided to look into corrective hand surgery. I went to one of the best orthopedic hand surgeons in Boston for an assessment. The surgery was doable, but I was scared. What if it didn’t work? What if I lost my finger in the process?

While I debated what to do, our youngest, Emily, expressed a very different view. For her, my digital hook was her favorite. Born a premie and always petite, she had tiny, slender fingers, and she loved to hold my bent index finger like the handle on a tea cup whenever we would snuggle. Her gentle touch was always a salve.

It took me a full year to gather up the courage to have the surgery. All went well, no complications or infections—though my hand surgeon commented that the operation was challenging, my skin as fragile as an onion’s. He shortened the finger so I could still pinch the tip of my resorbed thumb and stabilized the joint with two steel pins.

Emily was disappointed that she couldn’t hold it the same way anymore, but old enough to understand why the surgery was necessary. Gripping the finger, with its internal pins, was painful. So we found other ways to hold hands, as hers grew.

Then the bones in my finger began to resorb. Gradually, the pins poked their way out of the bone and stabbed my knuckle from the inside. I saw another hand surgeon, and we agreed he would remove the pins. As my finger had healed well from the initial surgery, it had formed what he called a “false joint,” and would still be useable.

So, the pins came out. My finger looked a bit squashed and quite stubby, but this time, I was much less concerned about aesthetics and just grateful to have a working finger without pain.

And there was one new attribute that delighted Emily: Since the joint was now more tendon than bone, I could rotate the tip of the finger in a circle, like a hula dancer. I’d hum a tune and make it jiggle, and she would giggle. Another saving grace.

I had my first hand surgery when Emily was five. This week, she turned 20. We still occasionally joke about my hula finger. And we still hold hands when we visit.

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.

Smelling in the Present Moment

· · 2 Comments

Our golden retriever, Ginger, may be going on 14, but her sense of smell is still in tact. Whenever we go for a walk, she leads with her snout close to the ground, sniffing every leaf and lamppost, inhaling dank secrets.

Which has me musing: How fascinating that we take in smells with every noseful of air. If we breathe through our mouths, we simply breathe. But through our noses, we get more than just essential oxygen—we get a world of sensation that resonates deep in our psyches. Smell, as any writer knows, is the strongest way to evoke memory. For a dog, olfactory memory is all the more powerful, I suppose.

And musing: How it is that our aging Ginger, who is nearly a centenarian in dog years, can still smell a whole lot better than I can? She has, of course, the canine advantage. But I’m also gradually losing my sense of smell.

Some of this is due to genetics. Both my parents began to lose olfactory acuity as they aged. This almost caused a calamity once, when my dad decided to cook sorbet from scratch and left the pan of boiling sugar on the stove unattended. The pan caught fire, igniting the cabinet above the stove. Fortunately, my parents called the fire department in time and their house didn’t go up in flames.

But some of the problem is due to scleroderma, as well. My nose has narrowed and tightened. In addition, Sjögren’s has significantly dried up my nasal passages. I irrigate my nose and sinuses twice daily with a saline solution, which helps my breathing and limits nosebleeds, a real problem in winter. But I still can’t smell as well as I once could.

Very frustrating. I used to have a really acute sense of smell—to the point that I would tell Al about some odd odor and he’d look at me as if I were crazy. This skill saved us some major kitchen disasters of our own. Years ago, in our first home, I began to notice a sour smell. After some investigation, we discovered that either mice or chipmunks had been storing dog food kibbles in the grid behind our refrigerator. Condensation had leaked over the kibbles, which began to mold. Not pleasant.

A few years ago, a plastic surgeon told me he could widen my nostrils to their original dimensions and “take a little off the top” of my rather prominent Herwitz nose to make it easier to breathe. I gave this some serious thought for a while. But so far, I’ve decided not to go the extreme makeover route. My nose may be big and narrow, but it’s mine, and I’m pretty attached to it.

Just recently, I’ve discovered another, much simpler strategy that appears to improve both my breathing and ability to smell—meditating. If I can settle into that quiet, still, contemplative place in my mind (not easy, but I’m working on it), slow down my breathing and just be present, my nasal passages widen, I can breathe deeper and smell more of the world around me again.

Ginger seems to know this, intuitively. Like all dogs, she lives in the present moment all the time. For me, walking her is a form of meditation itself (provided no other dog passes us in the opposite direction). So, I need to take my cue from her: Slow down, pay attention and smell the roses—or whatever else may line my path.

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.

Cutting Bandages

· · 1 Comment

Every morning and every night, when I get dressed and before I go to bed, I cut bandages for my ulcers. I divide them lengthwise to layer over my fingertips, then wrap a whole bandage around each finger to secure the half bandages in place. It’s become a ritual, this hand management, a routine essential to avoiding infection, a pit stop for damage control, a meditation.

For the past two weeks, as I traveled in Tel Aviv, Jerusalem and London, this ritual-of-necessity anchored me. No matter where Al and I were staying or who we were with, twice a day I had to stop and take care of my hands.

I cut bandages on my fold-out tray in a British Air Boeing 777 en route to Tel Aviv, on a bed in Al’s cousins’ apartment in Ra’anana before sundown on the Jewish Sabbath, at the kitchen table in our friends’ Tel Aviv pied-à-terre over a 1:00 a.m. heart-to-heart about letting go of your adult children, at an old oak table in our cousins’ London flat after our late night arrival from Israel, wanting only to go to bed and knowing I couldn’t, yet.

I was in the midst of cutting bandages when Mindi came to greet us at our friend’s apartment in Tel Aviv, the morning after we’d first arrived. I hadn’t seen her for nearly six months, since she’d left to make a life for herself in Israel, so I jumped up from the table, fingers half-done, to give her a big hug.

And I was cutting bandages last night, sitting on our own bed once again, relieved to have peeled off the day’s grubby dressings, blackened by twelve hours of travel. Were we really at the Tate Museum in London that morning?

Sometimes, the bandaging ritual during our journey was a damn nuisance, the last thing I felt like doing before leaving the house for the day’s adventures or when all I wanted to do was go to bed.

But at other times, it was peaceful, a time to collect my thoughts when everyone else was either asleep or away, an island of quiet to sort out what I’d seen and done and learned that day. As I’d cut the bandages, I’d listen to the familiar sounds of an unfamiliar setting—a wall clock’s tick, a dog’s bark, the click of heels on the floor above, the subterranean rumble of nearby Tube trains—and feel grounded.

I needed that stillness. Travel is so packed with newness, the unpredictable, the need to process so much information quickly and make snap decisions based on estimates of how your experience of your own world approximates this one, even though the two may be only tangentially related. Much as you’re constantly on the go, to fully appreciate the experience, it’s essential to slow down and just be.

So, I guess I have my bandages to thank for that.

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.