Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Backyard Rambles

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A great vacation lifts you out of yourself into a new world that enables you to reflect on your present state of being, gain perspective, inspiration.

And it doesn’t require extensive travel or expense. Last week, Al and I took time off for day-trips to places we’d never been right here in Massachusetts.

This strategy conserved both money and energy. When we’d had enough for the day, we just drove home. We got a relaxing mental break from work without the physical strain of travel—a significant plus for me.

Our drives took us north to Royalston, just shy of the New Hampshire border, for hiking in beautiful forests managed by The Trustees of Reservations; southeast to Brockton’s Fuller Craft Museum, to view exquisite blacksmith art and glassworks; east to Concord for a great exhibit of Annie Leibovitz photos at the Concord Museum, a pilgrimage to the graves of Thoreau, Emerson and Alcott, a view of the Revolutionary battleground at the North Bridge and a trek along Walden Pond; and west to Amherst and the Eric Carle Museum of Picture Book Art exhibit of original illustrations by Ezra Jack Keats (The Snowy Day), as well as a stop at the National Yiddish Book Center, where we watched actors rehearse and sort out the psychological motivations of characters in a translated play by David Pinski.

A rich week. I’m still processing. . . .

Scrambling over roots and boulders alongside Spirit Falls in Royalston, relieved that I could keep up with Al, I savored the music of water slipping over rocks (too dry this summer for much more). If a brook trickles in the forest and nobody hears, does it make a sound?

At the Fuller Craft Museum, marveling over swirled wrought iron tables and whimsical glass lamp sculptures, playing with rag weaving and admiring bowls turned from tree stumps, I envied those gifted, strong hands that made art of the everyday, every day.

Viewing the powerful photos in Annie Leibovitz’s Pilgrimage exhibit at the Concord Museum, I caught my breath before an image of the gloves that Abraham Lincoln wore the night he was assassinated at Ford’s Theatre—index finger and thumb stained by rust-colored blood.

At the headstones of Henry, Ralph and Louisa May, I photographed still lives of thank-you notes, postcards, stones, pinecones, leaves, and clusters of pencils and pens. One note thanked Emerson for saving his life. Another quoted “Self-Reliance”: “To be great is to be misunderstood.”

As rain pummeled the Eric Carle Museum, I read how Ezra Jack Keats broke the color barrier in children’s book illustrations in the ‘60s—a teacher wrote him that, after she read The Snowy Day to her class, African American students began to draw self-portraits with brown crayons instead of pink—and rejoiced in the power of art to change lives.

Sunday night, not wanting to let go of the week’s magic, I found essays by Thoreau and Emerson. Two quotes resonate:

This world is a place of business. What an infinite bustle! I am awakened almost every night by the panting of the locomotive. It interrupts my dreams. There is no sabbath. It would be glorious to see mankind at leisure for once. It is nothing but work, work, work.
—Henry David Thoreau, “Life Without Principle”

Insist on yourself; never imitate. Your own gift you can present every moment with the cumulative force of a whole life’s cultivation; but of the adopted talent of another, you have only an extemporaneous, half possession. That which each can do best, none but his Maker can teach him. No man yet knows what it is, nor can, till that person has exhibited it.
—Ralph Waldo Emerson, “Self-Reliance”

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.

Turn Around

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Most TV commercials, with their caffeinated, in-your-face blasts of sound and image, don’t stick in my brain like the ones from my ’60s childhood—the Madmen era of jingles and story-telling song ads.

There was one in particular that still tugs, a Kodak photo montage of a little girl growing up to become a young mother. The soundtrack—acoustic guitar and treacly male vocal—was “Where Are You Going?”, written in 1957 by Harry Belafonte, Malvina Reynolds and Alan Greene:

Where are you going, my little one, little one,
Where are you going, my baby, my own?
Turn around, and you’re two,
Turn around, and you’re four.
Turn around, and you’re a young girl, going out of my door. . . .

The Season I finale of Madmen alludes to this iconic commercial, when Don Draper lands an account with Eastman Kodak by creating a nostalgic slide show of his own family on the new Kodak Carousel—projecting the images he desperately wishes were true, even as he’s the architect of his marriage’s tragic demise.

Life is never so simple as we’d like it to be. I used to hate that Kodak commercial, because it was cloying and gave me a lump in my throat whenever I watched it. I didn’t like being manipulated by the images and the music, but it sucked me in, every time.

The commercial surfaced in my mind this week, as Emily returned to college for her junior year. She headed back on Sunday because she’s responsible for a freshman dorm once again (her first gig was this past spring, managing the high drama of an all-girl frosh dorm).

This, she informed us, was her last summer at home. And I have no doubt, she’s ready to live away on her own. In the two short months she spent with us, she was busy interning as a psychology research assistant, measuring math skill acquisition in preschoolers; baking some amazing desserts (strawberry rhubarb pie, raspberry lemonade squares, brownie drop cookies); sewing a dress with only some guidance from me and fitting assistance from a great seamstress I know; hanging out with friends; babysitting; working out (10-mile bike rides and mile-long swims); reading good books; catching up on favorite TV series; prepping for a tutorial this fall; and generally managing all of her personal affairs with great efficiency.

We spent a wonderful family day on Block Island and a great mother-daughter day on the Cape in Provincetown, visiting galleries, window shopping, buying hats and going to Race Point, then having dinner at the Yarmouthport inn where my family used to vacation when I was a kid. We saw Moonrise Kingdom. We enjoyed a Carrie Moyer retrospective at the Worcester Art Museum. We talked late at night. And we butted heads, mostly over stupid stuff, navigating—sometimes with quiet negotiation, sometimes yelling—the inevitable land-mined boundaries between mothers and grown daughters.

Twenty years ago, Em was a petite 5-month-old, delicate, kitten-like, just reaching the size of an average infant. She was born nearly 6 weeks early, only 3 pounds, 6 ounces, during a March snowstorm that prevented my obstetrician from reaching the hospital, at the end of a high risk pregnancy that culminated in pre-eclampsia, induced labor and a weeklong hospital stay.

We had known that she would need to arrive early. She was small for her gestational age, because my scleroderma was restricting my ability to deliver nutrients through my placenta. But the delivery schedule tightened further when I developed stomach pains on a Sunday and learned the next day at my check-up that my blood pressure had soared and I was spilling protein into my urine.

Reduced to a rag doll by magnesium sulfate to minimize risk of seizures, I lay around in my hospital bed, wondering what was next. Mindi, our oldest, had come to us through the gift of adoption. Getting pregnant had involved nearly a year of tapering down on d-Penicillamine, which I believe reversed my skin’s relentless tightening, and months of infertility work-ups and procedures.

I was scared. As I began the Petosin drip to induce what would become 19 hours of labor, I felt like I was falling off a cliff. A song from one of Mindi’s favorite videotapes, Rogers and Hammerstein’s Cinderella, looped endlessly through my head—In my own little corner, in my own little room, I can be whatever I want to be.

I didn’t really see Emily until the day after she was born, so tiny in her NICU isolette, her head no bigger than a delicious apple, feet no longer than my thumb. It would be a full month before she could come home at 4.5 pounds, and another month of concerted effort and help from a lactation specialist before she finally managed to nurse.

Turn around. The Em who agreed that we’d have a more peaceful goodbye if she drove back to school with just her dad is a gifted, bright, beautiful young woman, well on her way to making it on her own. We’ve come a long, long distance since she loved to be carried around, snuggling deep into her “bubble bag” sling wherever we went. There will be, God-willing, more great times together, and without doubt, more land-mined mother-daughter boundaries to cross. But I’m glad for her, very glad, that her last summer at home was a great one.

Turn around.

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.

 

Blue Sea Glass

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How is it that vacations always end too soon? Just 24 hours ago, we were arriving at the ferry dock in Portland, Maine, back from a week on a lovely, remote island in Casco Bay. The sky was periwinkle, the breeze stiff. As we’d sailed to the mainland, our captain pointed out a half-dozen porpoise riding the tide, hunting fish. I never was quick enough to glimpse them, but I heard one cackling as it dived over the waves.

For eight days, Al and I slept in, took walks every afternoon and went to the beach late, when the sun wasn’t searing hot. We read and I wrote and sketched. We sat for hours watching the terns fly high over the water, then nosedive into the waves, snag minnows and pop back into the air, gulping their silvery catch as they flapped into the headwind to reconnoiter.

And we collected sea glass. Mounds of it. Mostly different shades of white with a tint of lemon or lime, a tinge of aqua, a hint of lilac; also beer bottle browns and greens.

I’ve been gathering sea glass since our now-grown daughters were little and we would scour the beach, holding hands, singing and skipping over surf. Finding even one piece would be cause for a little dance. Here, though, sea glass was bountiful. So the search was on for a sea gluncker’s treasure, cobalt blue.

From our first trip to the beach, the day we arrived, I was hunting for blue sea glass. A great meditation, especially since I was sick with a horrid cold when we left home, hacking and sneezing. And totally pissed off, because, of course, you’re not supposed to be sick on vacation, and I caught it from Al, who had come home sick the week before and missed several days of work, as a result. Plus, after my recent vitreous detachment in my right eye, my sight was full of floaters—so many that when I gazed out at sea, the sky looked like it was filled with space trash.

Grumble, grumble, cough, cough, grumble, grumble. I walked the beach, focused on each stone and shell in my path. Will my vision ever clear? What if I get a retinal detachment? How can I get to the mainland fast enough?  I picked up a white stone shaped like a tiny ice cube and rolled it between my fingers. Why didn’t he wash his hands more carefully? Why was I so stupid to use his computer and not wash my hands after? I don’t want to be sick all week! We wait a whole year for this trip, and now what?

My breathing was so compromised that by Monday morning I woke up and decided that if I was still that sick by Wednesday, I was going home. I told Al, insisting that he stay and I’d pick him up on Sunday. He said he’d come with me, but I really didn’t want to spoil his week. We talked about future vacation plans and how I’ve realized, as my health gets more complex, I need better access to medical facilities, just for peace of mind. He agreed.

With that reassurance, I redoubled my efforts to make the most of the trip, breathed in healing sea air and kept searching for blue sea glass. By Wednesday I was doing much better, well enough to suggest a long walk to see an exhibit of paintings by local artists at the island’s historical museum. We headed out along one of the two main roads, which had just been repaved the day before. And stepped on warm macadam. Which glommed onto the bottom of my good walking sandals.

Grumble, grumble, cough, grumble, grumble. These are my favorite summer shoes! They support my crazy feet! What if I’ve ruined them? I kvetched as I walked along the roadside, trying not to step on any more tar and, instead, packed grass and dirt into the guck. Al said we could stop at the ice cream shack. We found some sharp rocks, and he was able to carve off most of the crud from the soles. When we got back to our rented house, he removed the rest with a putty knife and a nail. Then we went to the beach, Al’s pick.

This beach was next to the island marina. Al wanted to park our chairs with a good view of the moored boats. I wanted to walk a bit farther, but I agreed to his plan. After all, he’d rescued my sandals. As I set down my beach chair, I noticed a speck of cobalt in the sand, inches from the chair’s aluminum footing. It was a chip of blue sea glass, no bigger than the nail on my pinky.

That was the only piece we found on the trip. We walked miles of beaches, clambered over countless boulders, waded and swam in the ocean and trekked across sandbars at low tide. My cold waned and I caught up on my sleep. I discovered that the floaters are less visible when I look at multicolored and darker surroundings, and when I take off my glasses. My finger ulcers improved in the warm sun. I got a great tan. Time slowed.

Now, back home, having kept a morning business meeting, plowed through hundreds of emails and sat at the computer all afternoon, I wish it didn’t seem so long ago, already, that we were walking the beach. Later, I’ll layer this year’s sea gluncking finds to top off a jar on my bureau. And be sure to place the chip of blue where I can see it.

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.

Legacy

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Last Wednesday, March 21, was Johann Sebastian Bach’s 327th birthday. I know this because I was listening to a J.S. Bach extravaganza on my satellite radio while driving between home and business meetings and doctor’s appointments all day.

I clocked a lot of miles and heard a lot of Bach. Though baroque is not my first choice in classical, this proved a blessing. His music provided the perfect balance to the necessary and supportive but exhausting experience of seeing my rheumatologist at Boston Medical Center. I love all my docs at BMC and here at home—they are wonderful, dedicated physicians. But whenever we talk in great technical detail about symptoms and medication and diagnostics and what may or may not happen next, I’m always drained.

Scleroderma is so complex, involves so much to monitor, that when we discuss my latest issues, much as I probe and want to understand the minutiae, there’s a part of me that doesn’t want to know, that just wants to treat it as the white noise in my life, annoying, in the background, to be ignored.

After my appointment, west-bound on the Mass Pike, as I sorted through our conversation, on came Bach’s Violin Concerto in A Minor. And I remembered playing it. Years ago, in high school. I could still feel the trace of fingering in what’s left of my left hand’s fingertips. As the soloist began the poignant second movement, I recalled the phrasing, how I had loved to bow those notes. Bach’s haunting, wistful melody has been cycling through my mind, since.

So here I am, more that three centuries after Bach composed his masterpiece, and the music speaks to me. And I’m grateful. And awed by the way that a great artist’s creation still resonates, feels fresh, inspires insight, so many years after he set down his pen.

And I wonder, what will I leave behind? I wrestle with this question often. It will be my 58th birthday in a few weeks. I don’t feel old, despite the way my scleroderma gnaws at me. But I do feel that each day is more precious, that I don’t want to waste time any more doing things I don’t want to do. And that I want my writing, my art, to be my main focus.

This is what gets me out of bed in the morning, even on a day like this when I’m still tired after a full night’s sleep and feel like I’m moving through a vat of glue. Writing. Putting one word next to another, one sentence after another, to see where it leads.

Bach described his art this way: “The aim and final end of all music should be none other than the glory of God and the refreshment of the soul.” He reached his lofty goal note by note. I can’t say that I have as clear a vision for my writing, but I know I’ll discover it if I just keep at it, word by word by word.

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.

Music of the Spheres

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I woke up around 5:30 one morning this week to the sound of intermittent electronic chirping. At first, I thought it was my husband’s beeper. Occasionally Al, a hospital social worker, is on call for ethics consults.

But the sound was coming from the hallway outside our bedroom. Alas, it was our smoke detector’s low battery alert. Important, yes, but not my favorite way to wake up. So I stumbled out of bed, grabbed our TV remote and shut off the damn thing. (And, yes, made a mental note to replace the battery.)

If only I could do the same for the constant ringing in my ears. I’ve had tinnitus for a couple of decades now, ever since I tried a course of Trilisate to relieve joint pain.

A compound of two salicylates—derived from salicylic acid (which is the basis for aspirin), derived from salicin, the natural analgesic found in weeping willows (which made willow bark one of Hippocrates’ curatives)—this anti-inflammation drug also causes tinnitus in about 10 percent of users.

I was one of the lucky few to have the medication damage the tiny hair cells in the cochlea of each ear, my right worse than my left. The result is a constant ringing that has become more pronounced and annoying in recent years.

The noise has become loud enough that I had begun to worry it was affecting my hearing until, one night, when Al was snoring and I couldn’t sleep, I put a pillow over my head and could still hear him quite clearly plus every little creak in the house, along with the ringing. So, at least for now, that’s one fear allayed.

Lying in bed, trying to get back to sleep after shutting off the chirping smoke alarm, I was instead swamped by the ringing, which (as any one of the millions who live with this condition knows) is always worst when everything around me is quiet.

So, being a writer, I decided to listen to the sound and try to describe it. Our radiators began hissing. Similar, but not quite. It’s a rushing noise, but also a ringing. But not quite a ringing. More like a a very high pitched, constant, tinny tone. But not quite constant. It ebbs and flows within a narrow range.

If it weren’t so annoying, the sound would be etherial. It reminds me of space audio—radio emissions from the planets in our solar system, collected by the passing Voyager and Cassini satellites, and converted to sound. The recordings, made by physicists at the University of Iowa, are fantastic, bizarre, eerie and cool. My ringing best approximates the sounds of a Jovian chorus, without the clicking.

And that’s how I’m trying to deal with my tinnitus. Like my scleroderma, it’s there. I can’t stop it, so as long as I have to live with it, I might as well make the best of it as an otherworldly internal concert—my personal music of the spheres.

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.