Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

Feast of Freedom

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My hands are in pretty good shape today. A blessing, because I spent all of last Thursday and Friday cooking our annual Passover seder—a five course extravaganza that I manage to pull off each year.

I’ve evolved the menu over decades, based on what works, what doesn’t and what everyone asks for and complains about if I don’t make it. For the past few seders, I’ve switched from a meat-centric meal to fish and vegetarian entrées, creating a new challenge to find great recipes for guests who still wish I’d make that brisket.

And I’ve tried to modify my approach to accommodate my hands, which I’ve managed to wreck a number of times in the past when I went overboard with elaborate menu planning. I pace myself through two days of cooking, choose recipes that are fairly simple but taste terrific, and always wear disposable vinyl gloves to protect my ulcers as I cook.

Al serves as sous chef and kitchen first mate, helping with all of the chopping, slicing, jar-opening, package-ripping, utensil-retrieving and the many, many, many rounds of dish-washing and drying as I power through preparation of each dish. I could not do this meal without his help. Not to mention the fact that he takes care of the huge task of switching over our kosher kitchen to our Passover dishes.

But for all my planning and experience, on Thursday I was struggling. My hands were killing me because much of our Passover cookware is old and cheap (no point spending money on stuff you use only eight days of the year), and harder to handle than our regular kitchen utensils. By the end of the evening, after I’d worn out my right hand from folding all the meringue into the spongecake batter, I sat down, exhausted, and wondered why I was doing this to myself once again.

I could simplify the menu—this year’s included Egyptian haroset, a paste made of dates, raisins and filberts; pickled salmon; Persian cucumber and yogurt soup; a Moroccan salad of fresh oranges and greens with a cinnamon dressing; a main course of Turkish leek patties, Moroccan eggplant and tomato casserole, and steamed asparagus; and apricot sponge cake, strawberries, grapes, figs and chocolate for dessert.

It’s a lot of work. But the truth is, much as it takes a physical toll, I don’t want to give it up. The meal was wonderful. Everyone loved it. There were barely enough left-overs for our Sunday night supper.

My bottom line is this: I just don’t want to give in to my scleroderma. I am incredibly stubborn, a perfectionist and, yes, a card-carrying control freak when it comes to anything I’m creating.

In Gabriel Axel’s 1987 film Babette’s Feast (based on a story by Isak Dinesen), the heroine, a French refugee who becomes the cook and housekeeper for a pair of Danish spinster sisters, creates an exquisite meal for them and members of their small, austere church community, to thank them for sheltering her over the years. I won’t spill the delicious secret twist that’s revealed at the film’s end, except for Babette’s concluding line: When the sisters realize she has spent all of her money to create her amazing gift of a meal, she answers, “An artist is never poor.”

Creating a wonderful meal for people you love is an art form. It’s nourishment wrapped in beautiful presentation and delicious flavor. It’s a gift that makes everyone feel good, that enhances sharing, conversation and connection. For the Passover seder, it’s also a reminder of all that we have to be grateful for, living in a free country. I don’t entertain often because of my hands. But when I do, I go all out. And I’ll keep doing so as long as I’m able.

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.

 

On Turtles and Frogs

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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.

Hula Finger

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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.

The Cruelest Month

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April is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring
Dull roots with spring rain.

—T.S. Eliot, The Wasteland

My April started early this season, by a few weeks. With warming weather and spring’s promise have come ulcers and more ulcers—an inexplicable but oft observed trend in medical literature.

No one knows why, in spring, ulcers blossom along with lilacs. Maybe it’s the gravitational pull of the moon. My theory is that my skin expands and contracts as the temperature cycles from cold to warm to cold to warm again, causing it to crack like a concrete sidewalk at the end of winter and form more open sores.

Right now, I have nine ulcers on my fingers: four on the left hand, five on the right. To make matters much worse, an unusual ulcer on the knuckle at the base of my left middle finger got infected last week. The infection bloomed into cellulitis. The back of my hand puffed up and was warm to the touch—unusual for me, with my perennially cold hands—and made grasping painful.

My normal antibiotic regime made no dent within 24 hours. Fortunately, I was able to get in to see my rheumatologist on Friday afternoon (never let an infection go over the weekend—much harder to get medical attention without ending up in the ER), who consulted with an infectious disease specialist, who prescribed Rifampin, which is normally used for treating tuberculosis and to prevent the spread of bacterial meningitis, but is also used, in my case, for treating resistant strains of staphylococcus.

This was a new drug for me, but, thank goodness, it worked. I didn’t have to go on IV antibiotics, which I hate, because my veins are small and roll, making it hard and painful to insert the needle. If I have to stay on IV antibiotics for any length of time, I end up either having to be re-stuck about every three infusions, since my veins give out, or getting a PICC line under my right armpit (the left armpit veins are no good anymore, from past IV episodes), an extremely unpleasant procedure.

So now, thanks to the miracle of a more powerful oral antibiotic, my left hand is almost back to normal again, I’m IV free and feeling better.

Except for the aftermath of yet another frightening episode with infections. On Friday, waiting to see if the antibiotic kicked in, I kept monitoring my left hand to be sure the cellulitis hadn’t spread across my wrist and up my forearm. I had a bout of cellulitis several years ago when I could actually watch the redness move in a swath up my arm at a rate of about a half-inch an hour as I was driving home from work on the Mass Pike, racing to get to the infusion lab. I’ve learned since to catch symptoms early.

But even as I am meticulous with hand care and getting appropriate medical attention, an experience like this always reminds me how vulnerable I am—we all are—to sudden, inexplicable illness, flare-ups, accidents. It leaves me feeling shaken and uneasy for several days, until my body begins to heal and I realize that I’m still quite strong and able, despite the way my scleroderma can muster a stealth attack.

We all walk this earth, not knowing what comes next. Chronic disease just adds to the uncertainty—or perhaps, increases the predictability of uncertainty. If anything teaches that control is an illusion, it’s 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.

Cutting Bandages

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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.