Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

hands

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.

 

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.

Dropping the F-bomb

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Whenever I smash one of my fingertip ulcers—reaching for a faucet, reaching for the gear shift, reaching for a doorknob, any time I’m rushing and not paying attention—I curse.

And the only curse that works is the f-bomb. It’s short, explosive and foul. It’s the best way I know to discharge my anger and diffuse the intense, sharp pain.

My fingertip bones are severely resorbed, so the tips are jagged. When I hit an overlaying ulcer, it’s a double whammy of banging a deep sore on the outside and stabbing it from the inside. Even with my bandages, which provide a little cushioning, it hurts like hell.

But oh hell doesn’t cut it.

I also curse when my hands won’t do what I want.

A spoon slips through my grasp and hits the floor. F-bomb.

Coins slide out of my palm and scatter. F-bomb.

It takes five tries to pick the coins off the floor. F-bomb.

I can’t grab a knife from the flatware tray and have to pry it out with another utensil. F-bomb.

It takes ten minutes to align the zipper pull and zip up my winter coat. F-bomb.

I have a battle with shrink-wrap and the shrink-wrap wins. F-bomb.

I drop my cell phone getting out of the car and the back falls off into the sewer (yes, this really happened once). F-bomb.

Sometimes, when I’m cooking a big meal for company and getting tired and things start slipping out of my hands—like a potato I’m peeling or an onion I’m slicing—I don’t simply drop the f-bomb, I start throwing utensils into the sink and slamming drawers and yelling about how the counters are too cluttered and there’s no place to put anything. My family knows enough to stay out of the way.

I try my best not to curse when others are around or within earshot. I don’t want the f-bomb to creep into my everyday conversation and contribute to the decline of civil discourse.

But I hate this disease. Even though I’ve been living with scleroderma for three decades, and most of the time I can manage quite well, it really gets to me some days. I hate the way it’s wrecking my body. I hate how it’s robbed me of activities I love. I hate all the bandages, the ulcers and infections. I hate all the trips to various doctors and all the waiting in waiting rooms and all the medications. I hate discovering yet one more bizarre complication, like the fact that the roots of my molars are resorbing or the time the left side of my face went numb and I thought I was having a stroke and had to go to the ER and learned that I had an inflamed trigeminal nerve that the ER doc diagnosed as trigeminal neuralgia, which fortunately turned out not to be the case. It was “just” a rare neurological issue associated with scleroderma.

There’s no polite way to put this: When your body craps out on you, it sucks. And with a disease like this, you’re stuck knowing there’s no cure, for now, probably not in your lifetime, and even if, God-willing, there is a cure, your body’s too damaged for it to make a difference, and your health is only going to get worse.

Like aging.

When my sister and I were kids, our family used to travel by overnight train from New York to Cincinnati to visit my grandparents every December. Inevitably at the big family gatherings, all the adults would start complaining about their latest physical ailments. We’d sit on the side and snicker to each other, “When are they going to start passing around their X-rays?”

Fifty years later, I find myself engaged in those same conversations with my friends all too often. The older we get, the more stuff malfunctions, breaks and hurts. It’s shocking when it starts. We all know that our bodies are going to give out and we’re going to die someday, but we don’t really want to believe it until our mortality slaps us in the face. I’ve just been battling the inevitable much longer than most of my peers.

So I guess I have something of an advantage in the how-to-cope sweepstakes. But that doesn’t help on days when my house keys slip through my fingers and I drop the package I’m carrying as I try to pick them up and have to take off my glove to grasp the keyring but it’s too cold and my fingers go into a Raynaud’s spasm.

Then the only thing that works is dropping the f-bomb.

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.

Making Stuff

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For as long as I can remember, I’ve had cold hands. As a kid, growing up in New York winters, I would play outside making snowmen until I was too numb to feel my fingers and toes. Summers on the Cape, I’d jump in the waves at Nauset until I was blue and my teeth chattered nonstop.

But none of this mattered. I loved to do, to plunge into the world around me. And my favorite means of engagement was through my hands, making stuff. I could do anything with my hands—draw in any medium, do Japanese brush painting, throw pots, make copper enamel jewelry, create tiny origami animals, sew doll clothes and my own, knit, crochet, embroider, needlepoint.

I could also make music, on the full range of recorders; the violin (I was first chair in my high school orchestra and worked my way up to Mendelssohn’s violin concerto); viola; alto, bass and contra-bass clarinet; tenor sax; classical guitar; piano and a little percussion.

When I was about 10 or so, I lay in bed one night, wondering what it would be like to lose one of my senses. I couldn’t decide which I valued more, sight or hearing—but the one thing I knew was that I never wanted to lose touch and the use of my hands.

I could never have imagined the strange shape of my hands today. Decades of severe Raynaud’s have rendered my hand circulation erratic. Scleroderma has bowed and shortened my fingers; the bones have resorbed so much that my hand X-rays look like someone has taken a bite out of each fingertip, and my thumbs are filled with a veritable Milky Way of calcium deposits that erupt through the skin from time to time. I bandage chronic fingertip ulcers twice daily, keep vigil against infections and am constantly reminded, when I try to do something as simple as put change in my wallet at a cash register, that I just need more time than most to do basic tasks.

But I’ve often thought that the fact that I started off with such incredible fine motor coordination has enabled me to continue creating with skill, even as the process is so much harder.

My father had a saying: “Any problem can be solved if you have the right tools.” So this has been my watchword. My drawing pencils each wear colorful triangular rubber grips to cushion my fingers. I’m never without a pair of tweezers, used for everything from picking up beads that I’m threading on jewelry wire to pulling out the bobbin from my sewing machine. I protect my bandages and ulcers with plastic gloves whenever I cook or handle material that’s wet or could be a source of infection.

I can’t play the violin or guitar any more (yes, Doctor, I really did play before), nor a wind instrument, and I find pressing the keys on a normal piano keyboard difficult (even though I still harbor a wish to someday, somehow, learn to play Gershwin).

But I do make music in a new way—through my writing. For me, writing is all about melody, rhythm, assonance and dissonance, crescendos and diminuendos of sounds tied to words tied to thoughts.

And I make visual art through video that I shoot with a simple, lightweight camera and manipulate through the magic of my iMac.

I still miss my hands, even though I can barely remember what it feels like to be normal. Then keep making stuff.

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.