Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Touch

Matters of Faith

· · 2 Comments

I find this time of year complex. It’s the transition to fall here in New England, with chillier mornings and ever-shortening days, a time when Jupiter shines clear and bright in the night sky by 8 o’clock and I’m never sure how many layers to wear, a time when my fingers go numb again.

It’s also a time of fresh starts—graduate school and senior year of college for our two daughters, and, for myself, a decision to place a higher priority on finding new markets for my personal writing.

Most of all, it’s a time of introspection, the Ten Days of Awe, between Rosh Hashanah and Yom Kippur, a period of reflecting on where I’ve been, where I’m headed, how I could do better by those I love, and my personal goals for the Jewish New Year.

To that end, I try to find something inspiring to read for the holidays. After rereading Moby-Dick over the summer, with its sweeping themes of the struggle between good and evil inclinations, I turned to a book with an intriguing, albeit chutzpahdik title, Proof of Heaven by Dr. Eben Alexander.

A New York Times best-seller for months, Alexander’s story is a compelling description of his near death experience from a very rare form of bacterial meningitis. As a scientist and neurosurgeon with extensive knowledge of the brain’s inner workings, he had always dismissed his patients’ reports of near death encounters with the afterlife. But his own severe and sudden illness, which shut down his neocortex (the part of the brain responsible for awareness), led to an out-of-body visitation with a supreme consciousness and worlds beyond this one that convinced him, upon his miraculous recovery, to tell his story to the world of God’s omnipresence and unconditional love.

Heady stuff. When I finished the book, I felt uplifted—that is, until the cynic in me kicked in and I began researching on the Internet. Sure enough, there have been plenty of critics, and Esquire totally debunked Alexander’s story in their August issue.

Oh, I thought with a sigh, I’m just a sucker. But the story still had the ring of truth to it—whatever Alexander’s alleged weaknesses and possible ulterior motives for writing the book, his account is consistent with the vast literature of near death experiences that describe encounters with a loving, all-encompassing One that needs no words to communicate, that is responsible for all Being, and that requires our partnership as humans to heal and complete this world, the only one we are capable of knowing.

So I moved on to a more substantive source, Art Green’s wonderfully complex and compelling book, Seek My Face: A Jewish Mystical Theology. I’m only a third of the way through savoring it. What fascinates is how Green, a leading modern Jewish theologian and fluid writer, captures the concepts that Alexander was trying to describe and places them within a solid Jewish textual framework.

He writes of a God (for lack of a better term) who both “transcends and surrounds the world” as well as fills it utterly, an Omnipresence, a supreme consciousness that is both apart from and deeply a part of us all. He wrestles with this Oneness and our sense, as mere mortals, of separateness and fragmentation, from God, from each other, from Nature, from Being. He reframes the question so many have asked throughout the millennia, “Why did God create the world?”:

Why is reality the way it is? Why does human consciousness experience itself as separate but bear within it intimations of a greater oneness? If all is one, on some deeper or truer level of existence, why do we experience life as so fragmented?

This is not a book of simple answers or assertions about the afterlife, but it is deeply moving and challenging. I have no brilliant insights to add to Green’s discussion, only more questions of my own, and a conviction that there is some kind of loving, pure presence that we all are a part of and a partner of. That faith, and the belief in the basic goodness of people, despite all the suffering and evil we see in this world, is central to my being and my ability to cope.

I had the privilege of being present when both of my parents died—my mother, in 1999, from a rare and very aggressive form of thyroid cancer, and my father, in 2009, from Parkinson’s. Each passing was profound. With their last breaths, I had the distinct sense, most strongly with my mother, that this was a passage to another state, one far beyond anything I could understand. Their mortal lives were over, but their souls had gone somewhere else. I carry that awareness with me and find it reassuring, albeit fleeting.

Living with chronic illness brings these questions and musings to the foreground. You are simply more aware of your own mortality, of the fragility of life, of the many ways our bodies can cease to function well. I do not know of any other way to deal with it all without faith, doubts included—however each of us defines it, whatever religious tradition or other faith practice each subscribes to.

Simply put, without faith, ever-evolving, ever questioned, ever more nuanced, I would be lost. To each and all of you, whatever your beliefs, I hope this time of fall’s transition is a blessed one, filled with peace, personal growth and good health.

Photo Credit: Werner Kunz 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.

 

Under Construction

· · 4 Comments

For more than a year, I’ve been working on perfecting a pants pattern. The goal is to create a properly fitted master pattern that I can sew in different fabric any time I need a new pair of pants—no more trying them on in stores, which I hate doing because it’s so difficult to find a pair that fits properly, is made of good quality fabric and is affordable.

I do some fitting and sewing, then I stop for months, then I pick up the project again and work on it some more, then put it aside once again. I made one pair of pants from the pattern that didn’t fit quite right, went to a master seamstress for help refitting the pattern, got some more fabric to try it again, cut out all the pieces, then sat on the project for another stretch.

Here’s the reason I keep stopping and starting and dragging this out: My hands can’t sew the way I used to, and I’m afraid of messing up, so I avoid it.

I discovered sewing when I was about five years old. Someone, perhaps my mother, gave my sister and me matching sewing boxes; hers was white with purple trim and mine, white with blue. Each held a packet of needles, spools of different colored thread, a red tomato-shaped pin cushion, some pins and a pair of scissors.

I was in heaven. I began hand-sewing clothes for my Girl Scout Brownie doll, whose name was Shirley, out of old fabric scraps. Her fanciest outfit was an orange corduroy coat with uneven sleeves and a white button. Shirley didn’t seem to mind the amateur workmanship, though I was frustrated that the coat didn’t come out as I’d planned. But I kept on sewing.

As a teen, I learned to sew my own clothes by machine with guidance from a friend’s mother. My first effort was a robin’s-egg-blue jumper with a scoop neck and white braid trim. It had a 22-inch zipper in the back, which I tried to insert unsuccessfully seven times, after which my friend’s mother did it for me. This outfit I wore with a yellow print store-bought blouse at my junior high Girl Scout troop’s fashion show. A few years later, I sewed my senior prom dress out of a black rayon print and inserted a hand-picked zipper.

With practice, a lot of mistakes and some successes, I got better at sewing technique. When Al and I married, I wore a white satin and lace gown that I made myself. I hand-stitched nine yards of lace trim onto white tulle for the veil. When I finished, my fingers were very swollen. A few weeks later, I learned I might have scleroderma.

Though my hands continued to deteriorate, I was determined to keep sewing and made many outfits for my two daughters when they were young. But I have not sewn for myself nearly as much as I would have liked in the years since.

For one thing, I have a lot of fingertip ulcers swathed in cloth bandages, which makes it hard to feel the fabric and manipulate it. Even with a threading tool, I have trouble inserting thread into a needle. Pinning fabric and sewing by hand are very challenging. My hands get tired. I bang my knuckles on the edges of my machine when I’m not paying attention.

But I’m not willing to give up. I have a collection of adaptive tools—an ergonomic rotary cutter to relieve pressure on my wrists, bent-nose tweezers for gripping and pulling, a Y-shaped gadget that I can use instead of my fingers to maneuver fabric through my sewing machine, a 25-year-old Viking Husqvarna that has never failed me. I love paging through sewing magazines and handling fabric. I still design outfits in my head, a favorite pass-time since childhood.

So this Sunday, I pulled out the languishing pants pattern, already cut out of khaki cotton gabardine, sat myself down at the dining room table and began marking the pieces with white chalk to prepare them for construction. The first step involved sewing a fly-front zipper. It was really hard, requiring hand basting through some thick layers.

But I did it. Slowly. When I messed up, I removed the stitches with a seam ripper and did it over. And to my great surprise and pleasure, it came out as close to perfect as I could ever expect, even limited by a pair of hands that don’t always cooperate with my head.

I’ll keep plugging along. Who knows? Maybe this pair will actually fit right. And if not, I’ll just make more adjustments and try again, even if it takes me another year to finish.

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.

Transitions

· · 2 Comments

I made a cup of hot tea this morning. A few weeks ago, in the midst of July heat waves, this would have been unthinkable. But this morning it’s only in the ‘60s. August, yes. But this is New England.

I know, I know. If you don’t like the weather here, just wait a few minutes. It’s supposed to be a great week, mostly sunny, in the low ‘80s. Today is just a blip.

But my hands went painfully numb after I ate breakfast, my usual, Grapenuts with Lactaid and fresh fruit, orange juice. Everything was just too cold.

I’m not ready for this, not yet. Over the weekend, while taking a walk, I noticed a few leaves had fallen, harbingers of autumn. Six weeks past the summer solstice, and already the sugar maples on our street are beginning to sense the lessening span of daylight.

Back to layers—sweatpants, a short-sleeved sweater, a light sweater pullover, my fleece wrist warmers, socks, shoes. No doubt everyone else is in shirt-sleeves, shorts and sandals. I long ago learned that I have no choice but to accept the fact that I have to deal with my own broken internal thermostat, but the early signs of summer’s inevitable departure always get to me.

It’s a month for transitioning. In 10 days, Mindi will return from Israel after two years living and working in Tel Aviv, to begin graduate school back in the States. Though we’ve stayed in touch via electronic media, I haven’t seen her for a year. Until I can give her a big hug, I won’t believe that she’s finally home.

And this weekend, Emily returns from her live-in summer internship, soon to leave again for her senior year of college. Already, she’s taking the GREs, planning her grad school applications. How did this happen, so soon?

For the first time in four years, we will have both daughters home at the same time, both preparing for the fall semester. Sure to be a whirlwind of intensity, but I am looking forward to us all being together again, even for just two weeks.

Al and I still have a little vacation time planned for August, a few more days to get away from work and responsibilities before everyone gets home. A few more days to linger and relax in the warm afternoons yet to come.

The tea worked. My hands have returned to a comfortable level of blood circulation. Maybe I’ll be able to shed at least one sweater by afternoon. It’s sunny. The trees outside my window are a lush, deep green.

Hang on, summer. Hang on.

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.

Vacation State of Mind

· · 2 Comments

It was blazing hot last week here in Massachusetts—‘90s and high humidity—too hot, even for me, once again this summer. On the plus side, however, we were also on vacation, hanging out at home and doing day trips. Perfect weather for the beach.

Only one problem: I can’t swim in the ocean with ulcers on my fingers. Too much risk of infection. So we just spent one day, last Monday, a real scorcher, at the seashore. The water was wonderfully warm, and I was able to wade up to my thighs, the next best thing to swimming.

For the rest of the week, we escaped the heat and humidity by playing tourist in our own backyard and immersing ourselves in history—from dinosaur bones to the Dead Sea Scrolls, from Emily Dickinson’s reclusive world to whaling ship lore.

One evening, we watched a classic 1921 Swedish silent film, The Phantom Carriage, with live piano accompaniment. Two other nights, we enjoyed free outdoor concerts. We met Al’s infant grand-niece and took her and her parents on a Swan Boat ride in the Boston Public Garden. Later that evening, we paid respects to the site of the Boston Marathon bombing.

On our last day, Sunday, the humidity finally broke, and we headed out to Plimoth Plantation, a recreation of 17th Century life among the native Wampanoags and English settlers who arrived on the Mayflower.

Here we met Phillip, a Wampanoag descendant and interpreter, who wore his hair half-shaved, half braided, as his ancestors did, to avoid entanglement with a drawn bow. He explained all the ways the Wampanoags made use of nature’s bounty to thrive along the Massachusetts coast—building bark longhouses that provided ample heat and comfort throughout the winter, constructing summer huts from reeds that swelled with moisture to become rainproof, planting beans next to corn so the tendrils would curl up the stalks, shading the roots with squash leaves and blossoms that minimized weed growth. There were game and fish aplenty in the forests, rivers and sea. “We had everything we needed,” he said.

In the nearby English community, we chatted with interpreters who reenacted the lives of actual settlers. One young woman rocked in her dark thatched roof house, clothed in a long linen skirt and yellow vest, stitching a napkin’s hem, and told us how hard life was, how much she missed her old home in back in Surrey. The only good thing about coming here, she said, was the promise of owning land, something her husband, a cooper, could never have dreamed of back in England. When asked why they did not call themselves Pilgrims, she explained, “Pilgrims are people who travel a long way to a holy land. This is far from a holy place. It’s but a wilderness.”

Same land. Two diametrically opposed world views. I couldn’t have asked for a better example of how mind-set shapes experience.

So here I sit, typing on my laptop, inching back into my normal routine, pondering. Vacation, we discovered this year, is a state of mind. You don’t have to travel far to find it. And (I am certainly not the first to observe), how we frame our experiences defines every encounter. It’s all too easy to lapse into longing for what you lack in the midst of all the plenty you have yet to recognize. The best respite from struggle is gratitude.

The trick is to maintain that vacation awareness—that ability to step back from daily demands and clutter, to pause and truly see—in order to appreciate and make the most of what’s right here, right now.

I’ll keep trying.

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.

Memorabilia

· · Leave a Comment

A stack of 1960s Mad Magazines, flame and turquoise and mustard Fiestaware, a fake leopard fur coat. A quarter-size violin in a black cardboard case.

Rainbow mounds of beads, dishes of mother-of-pearl belt buckles, baskets of wooden spools, some with thread still wound. Pitchforks, spades, combat helmets, buoys and cowboy boots. A life-size leather horse.

Shelves of Steiff stuffed animals that remind me of the bristle-haired terrier and goldfish I used to have on my bed as a child. A cancelled Pepsi Cola Bottling Company paycheck for 74 dollars and change. A curled black-and-white portrait of a seated, laughing baby, staring brightly into the camera, with a neat cursive inscription on the back: “Helen or me. Keep.”

Al and I wander through dozens of booths on the last day of the July Brimfield Antique Fair, as exhibitors pack up their goods. The afternoon is humid, 90 degrees once again, and we stroll and poke without buying. Occasionally we ask how much, but the price is always too high and we don’t have the energy to bargain.

One table is stacked with milky green glass dishes that match some of our Passover set, passed down from Al’s grandmother to his mother to us. “Are we missing anything?” I ask as I finger a small 10 cent bowl. “No,” he says, rolling his eyes.

Al inquires about the price of a Red Sox pennant, similar to one he has in our basement. “Twenty-five dollars,” says the seller.

I open a wooden trunk that reminds me how I shipped my bulky clothes and desk supplies and a senior prom portrait of my boyfriend and me to college in a black-and-brass trunk that got misplaced. It took nearly a week to locate it. I missed the portrait the most. We broke up that Thanksgiving.

We walk by a drill press, a radial saw, Sears power tools like the ones that filled my father’s basement workshop. There are tables laden with steel chests that contain stacks of shallow drawers. My father used to store his screws and nuts and bolts by size, neatly labeled, this way. I pull open one of the drawers. Empty.

Al sorts through a bin of hardcover books. I imagine the Louise-Nevelson-like sculptures that could be made from keys and doorknobs and letterpress trays. We admire an old leather barber chair.

Sharing a fresh squeezed lemonade, we head back to our car, drained by the heat, glad our energy timed out in synch, proud we resisted buying any of the same kind of junk we don’t need more of, pleased just to point and nudge each other when we discovered something odd or ironic or familiar.

As I drive us back home on the Mass Pike, I wonder: What will I leave behind that might find its way onto a flea market table, picked over, bargained for, set back because the price is too high?

And I wonder: Whatever happened to Helen and her sister, with the beautiful cursive script?

A zinc bathtub, a white lace bridal gown with crystal beading, a mannequin’s arm. A black-maned rocking horse with a red saddle.

A hand-painted Chinese checker board, a vinyl Barbie case, green glass Coca Cola bottles. A tin milk cooler.

Cobalt champagne glasses, a silver flute nested in blue velvet, a neon orange life preserver. A wheel of fortune.

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.