Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

Stream of Consciousness

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It’s after 1:00 a.m. and I can’t sleep. One of my ulcers, that stubborn one near the tip of my middle left finger, won’t stop smarting. I try shifting positions, rubbing my hand, warming it under the pillow. Sometimes the pain is caused by a Raynaud’s spasm and eases as soon as my blood flows more freely.

But not tonight. I have to get up and redo the bandage. I don’t want to. It’s chilly in our bedroom, because I’m a fresh air freak and left the window cracked and it’s windy outside. But the ulcer stings and I can’t sleep. So I pull myself out of bed, grab all my hand stuff (bandages, Aquaphor ointment, Sorbsan dressing, cotton swabs, manicure scissors) and go into the bathroom so as not to wake Al (even though an overhead thunderbolt won’t disturb his slumber), turn on the light, cut off my bandage and redo the dressing.

This works, thank goodness. I must not have used enough Aquaphor the first time to salve the sore. Or maybe I didn’t cover the ulcer with a large enough piece of Sorbsan, an ecru-colored, felted material made of processed seaweed that binds with the ointment to create a gel-like cushion of protection. Or maybe it was the cheap CVS fabric bandages I use at night, which have some kind of waterproof coating that can irritate on occasion. I’m using my good, soft Coverlet bandages for this round. Not worth the night-time rationing routine.

So I go back to bed, snuggle under my blankets. And am wide awake.

Maybe it’s because I had to get up, even though my ulcer has finally quieted down. Or maybe it’s because I was writing well into the evening, eight hours of solid composing at the computer, working against a deadline to finish a client’s web content. Too much light from the computer screen before bedtime can affect your ability to sleep, I’ve read.

Maybe all that typing is why my finger was irritated in the first place. Except I don’t use it to type. I’ve become a master at touch-typing with only the fingers that can stand the pressure—and since I use a Mac wireless chiclet keyboard, the pressure is very light.

Maybe it’s because I’ve been immersed in words all day. When I write, I slide into a zone where an hour or two will disappear as the words fly from my mind, through my fingers to the keys onto the screen, and I won’t know what time it is. Even when I’m finished writing, the words whirl in my head, narrating story lines, fantasies, worries, what I have to do tomorrow, what I forgot to do today.

I lie in bed and the words swirl and swirl, until I remind myself that everything I’m thinking about will still be there in the morning when I wake up. I pour all the words into a large square box—this one is sea-foam green—close the lid, lock it and put it on a high shelf in the back of my mind where I know I can access it tomorrow.

Usually this works. Sometimes it doesn’t. Tonight, with God’s grace, it does, and I fall asleep. In the early morning, when my dreams are so sharp that I’m certain they’re real, I’m convinced I’ve been awake all night.

The sun shines through our bedroom shades, then slips behind a cloud. Wind puffs the curtains of the one cracked window. Half an hour after my cell alarm vibrates, I realize that I did sleep, for six hours, after all.

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.

String Theory

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I hate packaging. Especially shrink-wrapped anything. And pens or toothbrushes locked between a clear plastic bubble and cardboard backing. And those plastic boxes for mixed salad greens with cellophane edging and corner grips you have to pry open with a knife. And plastic cereal freshness bags that are sealed so tight you have to cut them with scissors, which makes it impossible to roll them up to keep the cereal crisp.

Just about everything we buy, with the possible exception of fresh produce, is so swaddled in plastic, cardboard and styrofoam that it requires major surgery to open the container. At least, that’s how it feels every time I struggle with scissors, box cutters, tweezers, knives and whatever other implement I can find to perform the operation. Often, I end up using my teeth—not good, I know, but since I lack useable fingertips, it’s the next best thing.

Of course, all this excessive packaging is not only bad for my hands (and teeth) in my postage stamp corner of the world. It’s also bad for the planet.

We do our part to recycle, buy recycled products and favor recycled packaging. We use cloth bags for groceries and say no-thanks to bags for items we can carry in our hands. I helped start our city’s comprehensive recycling program about twenty years ago. But recycling isn’t enough. We need to rethink our obsession with packaging and cut the excess.

I could be wrong, but it seems to me that packaging overkill started with the 1982 Tylenol scare in Chicago. When several people were poisoned by cyanide-laced Extra Strength Tylenol capsules, the manufacturer yanked 31 million bottles off the shelves, re-engineered their pain-killer to create tamper-proof caplets and created triple-sealed safety containers to regain market share.

It was certainly understandable at the time. But since then, everything seems to be double- or triple-sealed, whether necessary or not. Do we really need the tamper-proof cellophane seal around the neck of our over-the-counter pill bottles plus the peel-off seal over the bottle mouth (that shreds and sticks to the bottle’s lip when you try to peel it)? Or plastic wrap around each pair of rolls inside a plastic-shrouded eight-pack of toilet paper? Or shrink-wrapped index cards?

In a world where “see something, say something” announcements are the white noise of public spaces, ensuring that anything we ingest is safely packaged is a necessary paranoia. Someone did inject cyanide in those Tylenol capsules. Evil abounds.

But there’s tamper-proofing medicine and then there’s sealing something benign with so many layers of cardboard, glue, tape and plastic that you need a hacksaw to release the contents.

My dad was a master of this technique. Whenever I’d get a package from him in the mail, it would be hermetically sealed with clear plastic tape, packed with styrofoam peanuts, the buried goods wrapped in a taped plastic bag. There was always something very neat and orderly about his packages, the corners perfectly folded, the tape squared. Next to impossible to open, but a work of super-secure packaging art.

Perhaps, in this war-on-terror world, that’s what we’re seeking with all the pristine shrink-wrapped tissue boxes and triple-sealed moisturizer—reassurance that everything is nice and neat and safe. Nothing to worry about if your toilet paper is double-protected from the elements until you’re ready to use it.

Except, of course, that all that plastic ends up in landfills, and we’re running out of room.

Whatever happened to string? I can’t remember the last time I went into a bakery and left with a cardboard box of goodies tied with a white string bow, instead of sealed in a clear plastic, crush-proof clamshell. You could smell the cookies or pastries through the box, which made the trip all the more enticing. When you got home, you’d untie the bow and save the string in your kitchen junk drawer for another package, or tie it to the end of your white string ball.

Today, decorative mask string-holders, the kind that used to hang on the kitchen wall, the string’s tail dangling through the mask’s open mouth for easy access, sell for thousands of dollars as collector’s items. We’d do better to invest in R&D for safe, efficient, reduced-waste packaging, and start collecting string.

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.

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.