Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Taste

Hamster Wheel

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Monday morning, 4:18.

Rolling over to adjust my pillow, I hope I can get back to sleep. If I wake anytime between 2:30 and 4:30 a.m., that’s often a futile quest. Tonight is no exception, thanks to a dying battery in our smoke detector that prompts intermittent chirps—undoubtedly the reason I woke in the first place.

With Al’s help, the battery is disconnected and the house, peaceful once again. He falls back to sleep within minutes. But the dark side of my mind is on full alert.

As I lie in bed, I tell myself to stop worrying about a fire, now that the smoke detector is disarmed. This takes a while. I know it’s ridiculous, but it’s the anxiety witching hour.

My mind reviews the past day’s events. I had spent much of Sunday afternoon cooking a dinner that Al and I delivered and shared with friends, a couple we hadn’t seen in a long time. We’d been meaning to visit for months. The husband is a physician, recently returned home after spending many weeks in rehab after a freak accident damaged his spinal chord, leaving him mostly paralyzed from the shoulders, down.

Sharp as ever, he is reflective, soft-spoken, pragmatic. He can maneuver his electric wheelchair with a joystick and use a tablet and computer with adaptive tech tools. He intends to return, eventually, to teaching and practicing medicine. The couple’s courage, humor, strength and resilience are inspiring. We left feeling hopeful.

But as I lie in bed, trying to sleep, all I can think about is, What if?  What if I could no longer take care of myself? What if I could no longer get around on my own? What if that happened to Al? How would we cope?

I try to talk myself off the hamster wheel, but my mind won’t settle. Prayers, meditation, nothing works. I’m just too rattled. I think about how I’ve had the advantage of a slowly progressing chronic disease, which has enabled me to learn gradually how to readjust. Our friends’ lives were undone in an instant. Life is fragile. Change is the only certainty.

Hours later, after I finally get just enough sleep to be able to function, I discover a well-timed blog post in my email about the importance of living each day fully. It’s the obvious answer to the night’s fears.

Terrible things happen to good people who don’t deserve it—accidents, disease, loss, trauma. We can anticipate, maybe prevent, maybe avoid some of the worst; but, ultimately, there is no way to predict the bad stuff. The only way to contend with life’s inevitable risks is to live each day well.

Sunday evening, after our friend’s aide finished feeding him the spinach cheese casserole I’d baked, he turned his head to me and said, “That was wonderful.” Whatever fatigue and hand soreness I’d felt from working in the kitchen evaporated in that instant.

I share this not to brag, but to emphasize the point: The only way to contend with life’s inevitable risks is to live each day well. Sometimes that means just appreciating the fact that you can get up on your own in the morning, even when you haven’t slept soundly. Other times it means cooking a meal for friends who are going through a really rough time, even if your own hands don’t work the way you want them to—or simply savoring the food on your tongue, however you’re able to eat. Ultimately, it means being fully present, in your own life and for others, making the most of each moment, each hour.

I’ll try to remember that, next time I can’t sleep.

Photo Credit: Lewaedd-Q 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.

Soup of the Evening

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Beautiful Soup, so rich and green,
Waiting in a hot tureen!
Who for such dainties would not stoop?
Soup of the evening, beautiful Soup!
Soup of the evening, beautiful Soup!
—Lewis Carroll, Alice in Wonderland

I’ve been making a lot of soup, lately. Despite a crazy 48-hours of 90-degree humidity last week, the nights are generally getting cooler, the maples are tinged with orange and I’ve started wearing my sweaters again. Fall officially arrives this Sunday, September 22, at 4:44 p.m. here on the East Coast.

No better way to take the chill off my hands and the fall transition than a big, steaming pot of soup. Cooking for Rosh Hashanah last week, I tried two new recipes. For the first night, I made an Armenian variation of lentil soup that, along with the expected chopped tomatoes, onions and garlic, included apricots and a delicate combination of cumin, ground coriander and dried thyme. Very good.

The second night (I always experiment on my guests—fortunately, this works out 99.9 percent of the time), I tried a Hungarian wine soup with blueberries, pomegranates and strawberries (though you can use any combination of fresh or frozen fruit), orange and lemon juice, seasoned with cinnamon sticks and cloves. Even better. Both recipes can be found in the wonderful international Jewish vegetarian cookbook, Olive Trees and Honey by Gil Marks.

I like making soup almost as much as I like eating it. It’s a magical process. I’m always fascinated by how easy it is to create a nutritious meal with a pot, water (or sometimes store-bought stock from an organic market or Trader Joe’s, which I find saves time and money and is nearly as good as homemade), fresh vegetables and seasoning.

As one who grew up on Campbell’s, I used to believe that soup was far too complicated to make yourself. It had to come from a can. The broth had to be salty, neon yellow, with tiny cubes of chicken and slippery egg noodles.

Then I discovered how to make chicken soup, with chunks of meat and lots of onions and carrots and celery, maybe some noodles thrown in. A whole new world opened up. How could I have ever mistaken that red-and-white-labeled, ersatz mixture for the real Jewish penicillin?

I no longer eat meat, so I no longer make chicken soup, but I’ve become a big fan of all kinds of vegetable and fruit soups, from the easiest minestrone to an amazing gingered plum soup from my Moosewood collection.

You don’t even need a recipe. Like a good friend, soup is forgiving. You can experiment, throw together whatever vegetables and spices you happen to like, add a little of this and a little of that, adjust here and there, and create a culinary masterpiece. (Just be sure to make some notes if you want to replicate it next time.)

All it takes a little advanced planning. Most soups involve only about 20 minutes of prep work. Then you can just go about your business while the concoction simmers and fills your home with the most savory smells.

And there is something so comforting about sharing soup at the table—delectable, relaxing, the perfect conversation starter. Easy to swallow. Revivifying.

Soup is an invitation and a fulfillment. A promise kept. Liquid love.

Chorus, anyone?

Beau—ootiful Soo-oop!
Beau—ootiful Soo-oop!
Soo—oop of the e—e—evening,
Beautiful, beautiful Soup!

Photo Credit: elana’s pantry 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.

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.

Road Trip

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Hello, I love you, won’t you tell me your name?
Hello, I love you, let me jump in your game.

Taconic ParkwayI’m singing with Jim Morrison’s husky baritone, cruising west on the Mass Pike. It’s Sunday of Memorial Day weekend, drizzling, then raining, then sunny with patches of azure flashing behind wooly clouds, then pouring again, as I head toward the Hudson Valley to help Emily move home from college for a couple of weeks before she leaves for her summer internship.

Driving long distance is a meditation for me. As long as traffic isn’t onerous, I can focus on the present moment of the road before me while allowing the back of my mind to wander. Often, the answer to a problem I’m trying to solve will pop out of nowhere. During the dozen years that I used to commute 100 miles round-trip to Boston daily, I would do some of my best thinking during rush hour traffic jams.

But today, I’m just enjoying the classic rock road trip medley playing on my satellite radio and trying to keep my joints from locking up. I didn’t sleep well the night before, so singing words to old favorites is the best way to stay alert, and bopping to the beat helps me shift my weight so my back and hips don’t get sore.

If I ever get out of here…if I ever get out of here.

Wings will never rival the Beatles, but I still like McCartney. Most of the traffic, heavier than usual for a Sunday, drifts off the Pike at the exit to Interstate 84, heading, no doubt, for New York City and environs. Not yet few enough cars and trucks to set the cruise control, but easier from this point west.

Now that I don’t have to drive daily into Boston, I enjoy the road more. But commuting forced me to be a better driver. I had always been intimidated by heavy highway traffic, especially in and around a major cities, until about 17 years ago, when I agreed to participate in a study for new medication to treat Raynaud’s at Boston Medical Center. I had to drive into Boston once a month for a check-up as part of the study and realized the commute was not only doable, but I reveled in the sense of independence it gave me and the discovery that the city was more accessible than I’d thought. That led to the decision to seek a better-paying salary in Boston and twelve-and-a-half years as a marketing director in higher education. I had some hairy trips in bad traffic and nasty weather, but I never had an accident.

Working for myself now, I don’t miss the commute one bit. But on a day like today, I enjoy the feel of the road, the lush green landscape, the ever-changing sky. I just wish I weren’t quite as tired. Time to make a rest stop and stretch my legs.

Layla, you’ve got me on my knees.
Layla, I’m begging, darling please.
Layla, darling won’t you ease my worried mi-i-i-i-i-i-i-nd. . . . .

Thank you, Eric Clapton. Thank you Duane Allman. Thank you, Derek and the Dominos. No better song for driving, ever. More sun than rain, now, as I cross the New York border and head down the Taconic State Parkway.

I grew up farther south, along the Hudson, and there is something about the rolling landscape, the view of majestic blue Adirondacks on the horizon, the Dutch and Indian names for creeks and towns that feels comforting, familiar. I set my cruise control close to the 55 mph speed limit, sit back and glide up and down the hills. The Taconic is notorious for speed traps and deer. I will be glad to get out of the car soon.

Does anyone really know what time it is?
Does anyone really care about t-i-i-i-m-e?

Belting it out with Chicago, I finally reach the quaint Hudson River town near Emily’s college. Just a few more miles to go. The sun is out, it’s cool and windy. Rainbow pinwheels spin in a bakery’s front yard. The farm stand near the college is open for the season. I have figured out the structure for this week’s blog post.

I park behind the row of dorms near a few other parents, their cars crammed with luggage and boxes. Em arrives, smiling, with her bike and a few other items that we need to fit into my Prius. She’s already packed everything else into her sister’s Elantra that she’s borrowed for the year while Mindi is living in Tel Aviv.

The wind feels refreshing, now. It’s so good to stretch. We visit with a friend, drop off Em’s keys to the dorm that she’s overseen as a peer counselor (otherwise known as an RA) for the year, and go out for a late lunch at the local diner. The fish burger, sweet potato fries and tea revive my brain, a good thing. We have a three hour drive home, with me in the lead.

I switch from classic rock to jazz. Is it really possible that Em has just completed her junior year of college? Is it really possible that summer is almost here?

As we cross the Massachusetts border, the bottom arc of a huge rainbow bends from massive, scudding clouds to the Berkshires, below. I call Em, following several car lengths behind, on my cell. “Welcome back,” I say. “That rainbow is just for you.”

Photo Credit: PR’s photo goodness 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.

Fantastic Voyage

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In 1966, when movies still cost 50 cents and popcorn a quarter, I went with a friend to the Peekskill Paramount movie theatre on a Saturday afternoon to huddle in the crowded balcony with a bunch of other giggly, wise-cracking kids and watch Fantastic Voyage.

In what has become a sci-fi classic, a team of miniaturized surgeons enter the body of a scientist to zap a life-threatening, inoperable blot clot in his brain; the scientist is the only person in the world who knows how to make the miniaturization state last more than an hour, a secret essential to U.S. Cold War military strategy.

The team travels in a mini submarine through blood vessels and organs, battling antibodies along the way and a fiendish saboteur in their midst. If that isn’t enough to pique your curiosity, the movie stars a very young Rachel Welch and won two Academy Awards for some pretty neat special effects before the days of computer animation.

I’ve been thinking of this movie lately and just added it to my Netflix queue. One of the curious aspects of living with a complicated disease for so long is that I’ve seen more and more of my own internal landscape in recent years. With each new complication of my scleroderma, there are tests and more tests. And with digital imagery and optic probes the norm in medicine, and X-ray results easily viewed on an exam room computer screen, I’ve seen some pretty fantastic, albeit sometimes disturbing, sights.

There are the basics—all the many, many X-rays of my deteriorating hands, with each iteration revealing less bone at the fingertips and more starbursts of calcium floating under the skin. There are some foot X-rays, too, more recent, to confirm calcinosis in my toes.

There was the MRI of my chest a few years ago, when a CT scan to check rasping in my right lung (a possible sign of interstitial lung disease) revealed a questionable spot. It turned out, my pulmonologist explained while we toured the results on his computer screen, that the spot was nothing to worry about, just evidence that I’d contracted histoplasmosis years before, probably while spelunking one weekend near Pittsburgh when I was in grad school. As he scrolled through the MRI, the inside of my lungs revolved like the ceiling of a planetarium speckled with tiny white stars. Some scarring, yes, but so far, nothing too debilitating.

There have been regular echocardiograms to monitor signs of pulmonary hypertension, a late-stage scleroderma risk. Sometimes I close my eyes and try to doze through this non-invasive but often uncomfortable procedure, which requires the tech to press a rolling probe all over my chest and ribcage. Other times I’ll distract myself by watching the dark computer screen, with its blue and red images of blood surging through my heart, like an animated deKooning.

More tests. A CT scan of my brain and skull X-ray one Fourth of July weekend when I started to go numb on the left side of my face. Cross-sections of my very own convoluted gray matter. Yes, that’s where all those thoughts and images and feelings ping around. No stroke, thank God; rather, an inflamed trigeminal nerve was the culprit. But there was something eerie about seeing an image of my own facial skeleton, not some Halloween mask—the exact position of my eye sockets, nasal cavity, cheekbones, jaw—shades of what will remain when the rest of me turns to dust.

Of course, there have been all the routine images, too—ultrasounds of my womb when I was pregnant with Emily, the squashed elliptical pancakes of my breasts as seen on a mammogram, a slew of dental X-rays revealing how some of the roots of my teeth are resorbing—a rare scleroderma complication. Fortunately, I slept through my colonoscopy a few years ago.

I’ve seen the pink marbled walls of my bladder and the black-and-white image of a PICC line snaking into one underarm vein and then the other, when the first side was blocked by too much scarring. Not fun.

Most intriguing, once we got past the unpleasantness of inserting an optical probe through my nose, was a view of my pharynx. This took place when I saw a speech therapy specialist a few years ago to evaluate problems with swallowing. There are times that I feel like food gets stuck in the back of my throat, and I worry about choking. She handed me items to swallow—crackers, apple sauce, Jello—tinged with Kelly Green food dye, so we could see if the pathway to my windpipe closed properly as I ate. It did, a great relief, and also fascinating. I thought of a camera lens opening and closing when you squeeze the shutter.

I’m sure, as time goes on and my scleroderma does its own thing and medical technology becomes ever more sophisticated, I’ll see even more of my innards. Not the kinds of images you put in your photo album, like pregnancy ultrasounds. But miraculous, nonetheless. Even if the reason we’re digging around with probes and such is due to damage caused by an insidious disease, I’m still amazed by the view.

We take our bodies for granted, all the inner workings so hidden beneath our skin. If we could see what was really going on inside, all the intricacies of our interior universe, how the balance here affects the balance there, would we take better care?

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.