Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Smell

Sister Act

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“Remember, with the slurs, keep the notes nice and light. Let’s pick up at measure 69.”

The conductor taps his baton on the black music stand, and the St. Louis Wind Symphony breaks into John Williams’s Midway March, with the flute section playing brightly above the lush harmonies. This is the group’s first of only two rehearsals before next Sunday’s concert, a week from today. All are experienced musicians. My older sister plays piccolo and flute, first chair.

3320572325_f56c081618It’s been decades since I’ve heard her perform. During this two-hour afternoon session, the group is spot-rehearsing summer show-stoppers like the Candide overture, a Gershwin medley, The Magic of Andrew Lloyd Webber, Big Band Bash. It’s up to each musician to practice and learn or review whatever needs polishing before next Sunday. My sister makes the syncopated piccolo riffs in Bernstein’s Candide sound easy.

Today is the last of my three day visit, my first trip out here in seven years. Far too long. But something always seemed to get in the way of travel—tight budgets, busy schedules, the fact that she made a number of trips east while our father was ailing from Parkinson’s, the fact that flying by myself is exhausting. We’ve kept in touch by occasional phone calls, Facebook and email. Weeks, months, years, have slipped by.

So many years that when I checked my bag at the Delta counter at Logan last Thursday afrernoon, I was shocked that I had to pay $25 for the privilege. “We’ve been doing that for years,” snapped the ticket agent. Well, sorry, I didn’t know—and, by the way, if you didn’t charge so much per bag, maybe there would actually be room in the overhead compartments for everyone’s carry-on luggage. But I digress.

I’d love to carry on my bag. But I can’t lift it overhead or pull it down, and I don’t want to have to ask for help all the time. Getting through security with just my small shoulder bag was exhausting, enough—pulling out my boarding passes, juggling my photo ID, removing and replacing my laptop, taking off my coat, shoes.

Other than being squished like a sardine in my window seat and partially losing my hearing in my right ear due to shifting air pressure on the descent into St. Louis (it cleared by the next morning), the trip was blessedly uneventful. It was a relief to see my sister waving at the edge of the security barrier when I arrived.

Over the past few days, we’ve gone shoe shopping (she helped me find a great pair of Naot sandals that are both elegant and comfortable for my difficult-to-fit feet), walked through the stunning Missouri Botanical Garden in 90-plus heat and humidity, attended the St. Louis Fringe Festival, had lunch with friends I haven’t seen in decades, played Scrabble (no chance of winning against my sister, who has become a Scrabble online maven) and watched a hilarious performance of Spamalot at the outdoor Muny Opera. I’ve shared my new weather spotting fascination with my brother-in-law, had wonderful conversations about favorite writers with my younger niece and enjoyed our joint interpretation of what Tarot cards have to say about my business prospects (trust your intuition).

But sitting in on the Wind Symphony practice is the highlight. Music was a big part of our childhood. My sister was always the lead flutist in our school orchestras and bands. I played first violin and was concert mistress as a high school senior. I also played alto, bass and contrabass clarinet in our wind ensemble. It’s been nearly 35 years since I’ve been part, albeit vicariously, of a band rehearsal.

As the musicians wander into the music department practice room at Missouri U-St. Louis, I try to guess what instruments they play from the shape of the cases slung over their backs and shoulders. No more of those heavy black fiberglass cases that I remembered from high school—everything is lightweight, durable mesh fabric.

Watching one of the clarinetists assemble his instrument, plucking black and silver sections from their blue-velvet lining, I’m surprised as my throat clutches and eyes tear. I miss this. I miss the tangy smell of oiled wood and the bitter-sweet taste of reed on my tongue. I miss being able to make music myself. I can’t play clarinet anymore, because I can’t tighten my lips around the mouthpiece or manage the keys. It’s been decades since I could play my violin—an impossibility with my damaged hands. Octave spreads on the piano are beyond me, now.

So, instead, I write on my laptop as I listen. Composing sentences, capturing rhythms in words, is my music making. I sway to Gershwin and big band hits as I type, stopping to focus on my sister’s flute solos. I enjoy the stop-and-start practice to refine phrasing, the conductor’s bop-a-dah-be-dah-ba-dat-dat explanations of how the music should sound, the group’s wonderful sight reading, the great arrangements, my sister’s fluid notes.

Monday morning, she will drive me to the airport. But the music will linger, long after. And I won’t let another seven years drift past before I return.

Photo Credit: dongga BS 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.

Harbingers

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I think it’s spring. At least, it’s supposed to be, according to the calendar. But we should fire the groundhog.

This has been one long, cold winter here in Massachusetts. Our lavender crocuses just sprouted last week, but they’re hiding from freezing night temperatures and sharp winds, petals clasped against the cold, praying for the warmth that’s supposed to come with longer daylight hours. When the sun’s rays trickle into their corner of our backyard garden for a few hours in the afternoon, they gape as if astonished, exposing fuzzy stamens the color of flame, welcoming bees.

I’m slowly exposing my hands, too. Spring in New England has always been my toughest season, a tease of warmth to come, but mostly chilly and damp with harsh, sharp breezes that stir the sandy dregs of road salt, stinging eyes of those unwary.

The cycling from cold to warm to cold again exacerbates my Raynaud’s with frequent episodes of icy lavender fingers and numbness, ulcers that sting as if singed, new sores appearing weekly. The sensation is captured precisely by poet Elizabeth Bishop’s description of frigid seawater in At the Fishhouses:

If you should dip your hand in,
your wrist would ache immediately,
your bones would begin to ache and your hand would burn
as if the water were a transmutation of fire
that feeds on stones and burns with a dark gray flame.

Last year at this time, I had nine ulcers and a bout of cellulitis that took several blasts of antibiotics to cure. But no significant ulcers this season, so far. This is quite extraordinary. I’ve been very vigilant since I discovered a few months ago that I could heal my ulcers and reduce the number of ever-present bandages by wearing white cotton gloves and paraffin hand cream at night—this, a serendipitous solution to the fact that my skin started shredding in reaction to bandage adhesive.

Today, I have only my right thumb in a bandage, mainly because a grain of calcium is slowly emerging through a cracked ulcer. That’s it. I’ve been out and about for the past four days with no bandages at all. Truly amazing. I tote my moisturizer and apply it strategically throughout the day, type at my computer using cotton gloves to protect my skin and generally try to pay attention to what I’m doing so as not to cause any collateral damage to my fingers.

Our new heat pumps have helped, too, maintaining a much more even temperature throughout the house than our old steam radiators ever could. I still feel the cold all too readily, but at least I can quickly adjust the heat for the room I’m in and sense warmth within minutes. This, I’m certain, has aided my hands’ miraculous recovery.

So, even as my fingers are in happy denial, I guess it’s fair to assume that spring is on its way, at last. The weather forecast predicts temperatures in the ‘60s and low ‘70s this week. Slender blades of grass tinge lawns green. Buds mist the maples that line our street with the barest hint of chartreuse and crimson. Children’s bikes and basketballs litter front yards. Long-limbed girls from the nearby Catholic high school’s track team run down the street in shorts and tees, gleaming ponytails abounce. As Al rakes away winter’s detritus, the turned earth smells pungent with promise. Time to switch out my snow tires and at least consider bringing my down coat to the cleaner’s. But maybe not ’til April’s end, just to be certain.

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.

Outtakes

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One of the strangest aspects of my scleroderma is calcinosis—a condition that causes small bits of calcium to form under my skin and eventually work their way out. From time to time, a calcium pit will push through, leaving a small hole, like a tiny window into my finger, that fills with new skin in a day or two.

Sometimes the piece is sharp and painful as it migrates to the surface, and other times, it’s just a nuisance, a condition I’ve long learned to recognize and manage with careful hygiene to be sure an infection doesn’t settle into the resulting ulcer. The calcium tends to form at pressure points, in whichever fingertip surface I use the most often.

Over the past decade, calcinosis has also begun to occur in the bridge of my nose, where my glasses rest. I can’t wear contacts, because my eyes are too dry from Sjögren’s, another scleroderma complication. I’ve switched to very lightweight Silhouette frames, which are expensive but create barely any pressure. Still, the calcium forms. These pits need to be removed surgically, or I risk ulceration in this very delicate skin that is stretched too thin by scleroderma to heal properly. Not fun.

So it was, last Monday, that I headed in to Boston Medical Center to visit my ENT plastic surgeon, for a consultation about removing yet another calcium pit from my nose. I hadn’t seen him since 2009, when he skillfully extricated the last offender from the inside, instead of having to cut through from the outside. The time before that, I’d seen another surgeon who struggled with my fragile skin when closing the external wound.

He knew me right away—I guess my nose is pretty memorable—and made a quick assessment. The pit was very close to the surface and actually sticking to the underside of my skin. He could remove it from the outside or the inside. It would only take 15 minutes. In fact, he could do it right then. His associate also took a look and concurred. Easy enough to do. How did I want to proceed?

Now, I have never, ever, made a decision to do any kind of outpatient procedure on the spot. Especially on my face. Especially without Al along for moral support and to help me get home in case I got woozy afterwards. But as I sat there, debating and discussing pros and cons with the two specialists, I made up my mind.

It didn’t make sense to extricate the calcium pit from inside my nostril, a much more uncomfortable procedure, since it was stuck and could tear the outer skin in the process. If he cut from the outside, I’d just have a couple of stitches. And if I did it right then, I’d save time.

Yup, that was the bottom line. I really didn’t want to have to come back another day, get psyched up for the procedure, and spend yet a second morning or afternoon dealing with this. Plus, it could be weeks before I’d get into their schedule again, and the pit was stretching my skin so much it could possibly break through and not heal properly in the meantime. So, I said let’s do it.

Four shots of local anaesthetic—like sitting still for a bee sting, was his sympathetic assessment as I winced and grit my teeth—a slice, some grinding against bone and tugging on the stubborn remains of the calcium, a couple of stitches, and he was done in 15 minutes. The removed deposits, which he showed me floating in a little orange bottle that would be submitted to the lab for assessment, were like grains of sand, just like the ones that come out of my fingers. At least I’m consistent.

I felt a bit shaky as I left, but victorious. It was done. And almost routine. Has it really come to this? Even the oddest experiences with this disease are now just a matter of course? Sure, why not cut into my nose while we both have the time and take out the damn piece of calcium. Might as well be practical and just get it over with.

My nose is still healing, but it only hurt for a day. The stitches continue to absorb and will come out on their own. The worst thing that happened afterwards was getting a rotten cold, probably from the ENT waiting room, that knocked me out for the second half of the week. Two calcium pits popped out of my fingers, perhaps out of sympathy for their compatriot. Otherwise, it’s been just another week.

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.

Here, But Not

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I’m writing Saturday night, as the parsnip-pear soup simmers on the stove for Rosh Hashanah dinner on Sunday. And when this post publishes Tuesday morning, I’ll be getting ready to go to synagogue for the second day of the Jewish New Year.

In our wired world, our words can travel to their appointed destination on schedule, no matter where we happen to be or what we happen to be doing. So even though I’ll refrain from work and not touch my computer for the length of the holiday, it will seem as though I’m online, doing business as usual.

Here, but not. The Internet, email, texting, smart phones—all create the aura of being there, regardless of whether we’re actually present.

The irony, of course, is the more we communicate through the electronic ether, the less we’re present in the world around us. Everywhere I go, I marvel (to put it politely) at how many people are constantly texting or talking on their cells, noses buried in those little screens, never noticing the sidewalk or the sunshine or the car that’s making a left-hand turn in front of them.

And I think about this often, because time takes on a different meaning when you are living with a chronic disease. Minutes, hours, days are more precious. With each passing year, I feel a greater need to experience each day fully and do something meaningful with my writing.

Staying present, really present for the people I love, appreciating whatever each day brings, even the difficult, annoying parts, takes focus and determination. I can multi-task as well as anyone, but I no longer think that’s a great way to work or live. Better to simplify and pay attention to what’s in front of me than to spread myself too thin by trying to do too much, which always leaves me worn out and aggravated and struggling to slow down my brain at night so I can sleep.

Case in point: This past Friday I planned to drive to a supermarket about 20 minutes from home because they have excellent produce and I needed a lot of fruits and vegetables for my holiday menus. I left later in the day than I’d intended, trying to finish one more thing before I quit working, and decided to take a different route that I thought would be faster in mid-afternoon traffic. But, of course, I got lost, had to ask for directions, and spent 45 minutes getting there, instead.

I was totally annoyed with myself. Then I decided to let it go. There was no point getting aggravated because I wasn’t going to get there any sooner. As I drove, just watching the road and surrounding scenery, I got an unexpected insight about work that never would have occurred to me if I had continued multi-tasking and forcing my brain to track too many details, as I had for most of the day.

I spent the next hour at the market, focused on picking the best parsnips and pears and other savory produce, weighing and labeling each bag with its price, and gave myself a pat on the back at the check-out line when I discovered I’d actually stayed within my budget.

Of course, now I’m back to multi-tasking, writing while the soup cools on the stove. But it’s filling the house with wonderful smells, and when I wrap up this post, I’m going to enjoy watching the food processor transform the chunks of cooked fruit and vegetables into a swirling, golden mass. Then I’m going to bake the challah that’s quietly rising. And then I’m going to get some sleep.

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.

A Little More Summer, Please

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How did it get to be September, already? It’s still in the ’70s, thank goodness, but the air is sharpening. Ginger tracked dried leaves into the kitchen yesterday. I’ve cracked the porch slider, but I’m wearing wrist warmers against the light breeze as I type.

I live in New England because I love the color and variety of all four season. But every year, I have a harder time letting go of summer. For months, I’ve been living in tank tops and shorts, walking everywhere in my sandals, rarely needing a sweater, even at night. After weeks of extreme heat, two of my finger ulcers finally healed, and I’m down to four bandages. Most Saturday nights, I’ve strolled with Al to the corner frozen yogurt stand for sundaes and savored the sweet-tart coldness.

It’s been many years since the girls were young and the coming of September meant the end of summer camp, no more punting for play dates or meaningful activities to fill all that free time.

The beginning of school was always a rush of excitement, new clothes, new notebooks and lunch bags, seeing friends and meeting teachers. I welcomed the return of structure and predictable schedules, the chance to clear my head and hear myself think once more.

Now, as the days grow noticeably shorter, September means I’m going to be cold again, soon. It’s an adjustment, as much psychological as physical. Back into sweaters and jeans, fleece and wool. Back into jackets and coats even while others are still in shirtsleeves. Back into gloves and hats. Back to numb fingers and hand warmers, too much time spent dressing to go out, too much time warming up when I come in.

September also means the approach of the Jewish New Year, a time of reflection and renewal. For this, I find the crisp air bracing, a source of energy and clarity as I review the year just past and start afresh. Here in Massachusetts, Rosh Hashanah, marked by apples and honey for a sweet New Year, always coincides with apple-picking season. It fits.

Still, I’m not quite ready to let go of summer. Leaves began falling from the Norway maples on our street a few weeks ago. I’m always surprised when I first notice, usually midway through August. It seems too early. So far, just a few leaves here and there, scattered across lawns like random shells washed up on shore. Most trees remain lush green, despite the lack of rain this summer and harsh heat waves of July.

But I saw someone using a leaf blower last week. Emily started classes as a college junior yesterday. Mindi is home for two more weeks before returning to Tel Aviv. Shadows lengthen as we spin on our elliptical path, farther from the sun.

Outside my home office’s bay window, the yews cast a prickled, shimmering silhouette on beige mini-blinds. A neighbor blasts hard rock out an open window. A small plane hums overhead. I’ll walk Ginger soon, wearing my jeans and a sweater. But still in sandals.

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.