Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Grand Old Lady

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Ginger is getting old. She turned 14 about a month ago, which means she’s 98 in dog years—or people years, I can never keep it straight, seeing as she’s lived 14 years as a dog but is the equivalent of a centenarian.

She’s been with us since she was two, a skinny, flea-bitten dog that Al rescued from owners who sold her for the price of their overdue electric bill. From the day he surprised our girls after school, waiting with her to walk them home, Ginger has been our beloved companion—silly, rambunctious, cuddly, trusting, faithful—the Golden Retriever Mindi had begged us for, for years after our other dog died.

My constant companion who hangs out under my desk while I write and follows me all over the house, often positioning herself where I’ll trip over her if I’m not careful, she’s doing really well for a Golden. Our vets are always impressed and tell me she’s way out on the tail of the big dog survivor bell curve, still friendly as a puppy and a total love bug, even as she’s white in the face and struggling with arthritis.

But it’s hard to watch her age, especially as she has more trouble getting around. She often trips over her front paws when I walk her, because, as the vet explained, she has less range of motion in her hips and has shifted weight-bearing onto her front legs. And she can’t climb stairs—or, at least, she’s afraid to—which we learned recently when she made her way down into the basement family room twice in one week and had to be carried back up both times. (We’ve since blocked the door.)

So, here we are, both with our ailments. But unlike me, she has no way of understanding what’s happening to her body, and she’s completely dependent on us to help her.

We’ve tried a few different arthritis medications. The first irritated her stomach so much she stopped eating after a week, and the second made her throw up after two days. Now we’re in day five of trying that same med plus an antacid pill twice a day, and so far, so good.

My challenge has been trying to figure out how to get the medicine into her. The first option was a chewable tablet, so that seemed like the perfect solution until she stopped eating. Her current medication is a liquid, which I’ve been mixing into low fat ricotta cheese—for Ginger, a huge treat.

The problem has been the antacid pills. I can’t open her jaws with my fingers. I can’t hold the pill. Al leaves too early in the morning to give it to her, because Ginger, grand old lady that she is, doesn’t rouse until after 9 o’clock most days. Our former dog would snap at pills. So, for a few weeks after Ginger threw up, even after I discussed the problem with our vet and he suggested the antacids, I procrastinated. I just stopped giving her meds. I was afraid to try.

But then I took her for a walk last week and she was tripping so much I decided I really had to get over myself and figure this out. A smidge of butter on the pill, delivered on a teaspoon, did the trick. After only a few days, Ginger now perks up her ears when it’s pill time, trots over to the fridge while I prepare the spoon and swallows her pill patiently. She’ll even allow a second try if I miss my aim and the pill falls off the spoon. A good thing, because my hands won’t cooperate easily.

Ginger’s big treat, also part of the mix to be sure her stomach doesn’t get irritated, is a piece of challah after she’s taken all her meds. This is her favorite food in the whole world. She grabs it from her bowl and runs under the kitchen table to eat in her bed.

Yesterday when we walked, she was perkier, sniffing every leaf and blade of grass, curious, not lagging behind me as much when we went up a slight hill on the way back home. She got up from her bed with less trouble this morning and took a leisurely downward-dog stretch. She’s eating normally. So I have my fingers crossed.

Tonight Mindi comes home from a year in Israel. She’ll be with us for a month, then going back to Tel Aviv for another year. She’s asked after Ginger often when we’ve Skyped, and we’ve tried to get Ginger on screen for a woof or tail wag, but without much success. I’ve had my worries this year, watching her age more rapidly, if she’d hold on until Mindi’s return. She has, and so have we. And I’m grateful, very grateful.

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.

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.

 

Strong Bodies

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Thighs like small boulders, wasp-waisted, she approaches the platform. The young Olympic athlete dips her hands in resin, claps, strokes her chalked palms back and forth over the steel barbell weighing 94 kilos—207 pounds—shifts from one foot to the next, then back again. The horn blasts. She clenches her jaw, squats, yanks the barbell up to her shoulders, strains to stand. But the weight is too heavy. She dumps it, thud, leaves the podium, head low.

She returns a second time, still cannot make the clean and jerk. Her coach drapes a jacket over her slumped shoulders. Other women in her weight class, with equally muscular bodies, have hoisted the barbells high. But I feel for her. I can barely imagine what it takes to grasp a weight that heavy and lift it even an inch off the ground, let alone heft it overhead.

The Olympics are contests of perfection. Swim and track meets are lost by hundredths of a second. Gymnasts fail by degrees of perpendicularity. Divers are dropped for splashing.

And yet. How extraordinary are those strong, perfect bodies. What amazing feats of stamina, coordination, speed and strength, even by those who never make the final eight. Whenever I watch the Olympics, especially the summer games, I’m always amazed—and a bit jealous. At no point in my life, healthy or not, was I athletic enough to entertain a glimmer of hope that I could be like that.

Or so I thought. Every year in high school gym class, dressed in our light blue bloomer jumpsuits, we would tumble and stumble through two weeks of gymnastics. It was always my favorite unit, though I was terrified of the beam (especially since we had to balance in sneakers, which, of course, made it impossible to feel or grip the narrow wooden span).

I loved the parallel bars, felt exhilarated when I could do a flip or a penny drop. I flew over the vault, throwing my legs cleanly across the padded horse and landing firmly. And I amazed my teachers and astonished myself when, one day, I shinnied all the way up one of the thick, scratchy ropes that dangled from the gym’s high ceiling and touched the top. Me, the shrimpy first chair violinist who was afraid of heights. I wrote it all off as a fluke.

Now physical challenges are so much harder. But I’m in better shape today, even with scleroderma, than I was 10 years ago. I take Pilates every Monday night and a dance class on most Thursdays, stretch each morning and walk Ginger in the afternoon. I want to look and feel my best as I age, and I don’t want to give in to my disease. The latter has proven to be a powerful motivation, more than vanity and my own drive for perfection.

I want to be strong. I know I need to be strong to fight scleroderma. Living with any chronic illness involves a willingness to accept limitations, but I keep pushing the envelope to find out which limitations are real and which are just obstacles of my own making.

Sometimes I wonder what my health would have been if I’d had that attitude back in high school and pushed harder to be athletic. If I hadn’t assumed I was a klutz. If I hadn’t bought into negative stereotypes of female jocks.

But it’s far too late for that, now. So I keep working out and take great pleasure and, yes, pride in discovering that my body still responds well to physical exercise. And I watch the summer Olympics, daydream what it would be like to be a competitor—and cheer for the losers who keep on 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.

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.