Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Mind

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.

 

Miracle Quest

· · 2 Comments

Twenty-six years ago this fall, I got on an airplane and flew to Pittsburgh to see Dr. Virginia Steen, one of the pioneering rheumatologists in the field of scleroderma research. She was kind, thoughtful and clear: I had systemic sclerosis, I was on a risky path, and I needed to start taking d-penicillamine (not to be confused with penicillin), an immunosuppressive medication that was, at the time, one of the main treatment modalities.

The drug was not without its risks and critics, and it has since been discredited in some of the medical literature as ineffective in treating scleroderma.

But you will never convince me of that. Six months after I started taking it, the wrinkles in my forehead began to reappear. Within a couple of years, the darkened, tight skin on my forearms had receded and my veins once again contoured the backs of my hands.

Most notably, I felt better—as if someone had switched on the light inside my brain that had been dimmed since my symptoms first emerged five years earlier. So much better, in fact, that I travelled back to the University of Pittsburgh and got Dr. Steen’s clearance to taper off the penicillamine, and, if I did okay without it, to try to get pregnant. I did, and I did, and our younger daughter is now 21.

Everyone’s course with this complex, debilitating disease is different. Better treatments have emerged. But I consider myself very lucky. When I saw Dr. Steen the second time, she told me she had believed when we first met that I was headed for a very difficult course. Had I not responded so well to the medication, I imagine I would be living, if still living, with severe disfigurement and many more complications.

I was recently thinking of Dr. Steen (now at Georgetown University Hospital in D.C.) after skimming through an online scleroderma forum. Someone had posted a question about her. I added my two cents’ worth. Many had shared similar, glowing anecdotes. A couple told angry, critical stories of their visits.

So much of dealing with this or any other complicated, chronic illness, depends on finding medical specialists you can trust. I’m fortunate to have had the resources to see Dr. Steen years ago and to live an hour’s drive from Boston Medical Center, with access to some of the best scleroderma specialists in the world. I’ve learned volumes from them and from my local rheumatologist, a man who has been treating me since 1985 and who understands the disease very well, but who also knows and admits the limitations of his own expertise.

In the scleroderma forum discussions, there is a lot of anguish, fear, pain. There are some very knowledgeable people who share good advice about managing the disease and all the information you need to track in order to manage your care. There are also many seeking miracles, people who distrust their physicians and look to fellow travelers for tried-and-true solutions.

Unfortunately, for some, that distrust is well-founded. Scleroderma is rare enough that there are still far too many internists and rheumatologists who aren’t well versed in its many symptoms and ramifications. Some patients get really bad advice and struggle to get an accurate diagnosis and appropriate treatment. Who else to trust but those who are also going through the same thing?

While some homegrown advice is useful, however, some of it is misguided. When you’re scared, without a solid understanding of the disease, it’s difficult to sort it all out.

As one who has benefited profoundly from expert medical care, I believe it’s essential to get help from knowledgable medical professionals who specialize in scleroderma. This is a select group, but they are worth the time, travel and expense to see. Both the Scleroderma Foundation and the Scleroderma Research Foundation in the U.S. provide resources to find local and regional scleroderma specialists.

There is no miracle cure for scleroderma—not yet. Both foundations are working hard to support research that will eventually lead to that cure. In the meantime, the real miracles, for me, are that I found a team of physicians who have helped me stay as well as I am able, that I have the loving support of my family and friends, and, above all, that my body, for all its malfunctioning, still works as well as it does.

That, and a good night’s sleep, are a lot to be grateful for.

Photo Credit: gnackgnackgnack 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.

Barnacles

· · 2 Comments

Overheard on the Block Island Ferry this past Sunday . . .

Boy, about 10, looking over the railing at sea foam as the ferry pulls out of Old Harbor, heading back to the Rhode Island coast: “Look, there’s barnacles in the water! Do I have barnacles?”

His older brother, maybe 11: “No, you don’t get barnacles unless you’re under the water for a long time, like maybe two weeks.”

Fortunately, the older brother is correct, and the boy has attracted no barnacles of his own. The ferry’s powerful engine hums as we pick up speed and cruise past the island’s cliff-like dunes, dull copper beneath overcast skies.

I lean back against the blue bench along the middle deck, watching the dunes and the North Lighthouse slip past, and contemplate barnacles, those tiny, cream-colored sea creatures that attach themselves to boulders and boats and whales in lacy patterns and feed on plankton within their sharp, crusty shells. No need to move anywhere once they find a home. They just latch on and draw sustenance from whatever drifts their way.

Like worries.

I have a few of my own that I’d like to shed, worries about my health, money, work, family transitions, our aging golden retriever, reactionary politics, the NSA, the Middle East, climate change.

But they’re tenacious, clinging to my subconscious, scraping me when I indulge them, cutting. No easy way to dislodge them and toss them back into the sea.

The ferry cruises now at full speed across open ocean, heading to the mainland. A small red tugboat pulls what appears to be a stranded white yacht. On the horizon, sailboats catch the evening breeze. I relax into the rhythm of the boat rising and falling over light waves. Concerns that have dogged me all day when I should have been enjoying myself magically evaporate into the moist sea air.

I’ve been rereading Melville’s brilliant Moby Dick this summer. As the ferry surges forward, I recall Ishmael’s opening monologue:

Whenever I find myself growing grim about the mouth; whenever it is a damp, drizzly November in my soul; whenever I find myself involuntarily pausing before coffin warehouses, and bringing up the rear of every funeral I meet; and especially whenever my hypos get such an upper hand of me, that it requires strong moral principle to prevent me from deliberately stepping into the street, and methodically knocking people’s hats off—then I account it high time to get to the sea as soon as I can.

A flock of cormorants fly in formation, skimming the water. The setting sun burnishes blue-black waves to a salmon-pink patina.

From saltwater we came. Perhaps that is why the sea is so soothing. Sail on, sail on, swift enough to evade the barnacle’s pincers, slow enough to cast angst adrift. At least ’til landfall.

Photo Credit: shoothead 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.

Too Much Stuff

· · 2 Comments

My desk is out of control. This happens every few months or so, when I’ve been juggling  a variety of projects at the same time, and I have a pile for this, here, and a pile for that, there. After a while, the piles start crowding out any space in the middle, and I feel like I have nowhere to work or room to think.

Then I start moving piles to corners of my office. Problem is, the piles get dispersed, but I don’t make a decision about filing or tossing and the clutter remains unresolved. It just seems to follow the biblical injunction to be fruitful and multiply.

This proliferating clutter seems to mirror what’s going on in my life. I’m trying to do too much. I know this. I know I need to make some decisions about priorities and focus. I’m working on it. The trick is to keep this from becoming yet one more project that piles up.

I used to pride myself on my ability to multitask—the modern-day badge of honor, especially for women who juggle family and career. It’s an important skill-set, sometimes crucial for getting through the day. But there is growing evidence that multitasking isn’t necessarily such a virtue. In fact, multitasking can actually reduce productivity by up to 40 percent.

It can also be fatal—as in texting while driving.

The older I get, the more I want to declutter—my desk, my to-do list, my home, my mind. I want to eliminate the stuff that isn’t necessary and concentrate on what’s really important. I want to be able to focus on one thing at a time and give it my full attention, then move on to the next. Quality over quantity.

Essential for any well-lived life, but all the more so when you are managing a chronic disease, spend too many hours in doctor’s appointments each month and want to make the most of the time you have, especially those days when you’re feeling strong and alert and have energy in reserve.

Where to begin?

It seems that whenever I clear my desk, I begin to clear my head. I’ve also found that making a series of small adjustments over a longer period of time—rather than undertaking a major, exhausting purge—adds up to a significant, nuanced change of habit.

So my goal is to pick one pile, one drawer, one small corner to declutter each day—a small project that takes only about 10 minutes. Over the course of a week or a month, I hope to clear my space and clarify my priorities.

The Jewish High Holidays come early this year, the first week of September. The weeks leading up to Rosh Hashanah, the Jewish New Year, are a time for reflection and introspection—how to do better, be better, mend what needs tending and start afresh.

There’s a lot more to it than clearing your desk. But that’s as good a place to start as any.

Photo Credit: Dimmerswitch 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.