Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Sight

Feed the Dragon

· · 2 Comments

This is an experiment. I am dictating this blog post with voice activation software. I’ve considered making this investment for some time, but my digital ulcers finally made the decision for me. My fingers have been so sore over the past few weeks that the only way to help them heal is to stop typing. And I can’t stop. Writing is my livelihood and lifeblood.

The investment, even in the first few hours of learning how to use my new Dragon software, is already paying off. This is an absolutely amazing experience. The transcription is quite accurate. I still have a lot to learn and, to some extent, I’m mixing keyboard corrections with dictation. But 99 percent of what I am writing here is voice dictation. And that’s just with the limited skills I’ve learned in a basic tutorial.

One of the great things about dictating is that the words appear on the screen faster than I can possibly type. At the same time, the process of translating thoughts to a sequence of spoken words is going to take some getting used to. Even as I hear the words in my head whenever I type, there is a seamless mental process that translates those words through my fingers to the keyboard and onto the screen. In speaking those words to the dictation software, I almost have to ignore the sound of my voice in order to focus solely on the words before me.

That said, I am thrilled to have such a powerful alternative to typing with my fingers. I’ve been playing with emails and text messages, and this blog post is my first attempt at writing something longer.

There are, of course, some amusing aspects to the software. Think AutoCorrect on steroids. There is a whole lexicon of commands to learn. For example, if you mess up what you just dictated, you say “scratch that.” However, I actually had to type that phrase just now, because the software thought I was giving a command. So, there’s a lot to learn.

I also wonder how dictation will affect the way I hear the music of words, phrases and sentences. Will my writing become more conversational just because I’m speaking to my computer? Or will it sound more stilted to my ear because I have to speak in phrases . . . at least for now.

My new Dragon has little wings. It needs nourishment and attention. We must exercise together before it will really be able to fly. I can’t wait to see the view.

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.

Image Credit: Dragon Medallion, Ming dynasty (1368-1644), silk and metallic thread tapestry, Metropolitan Museum of Art.

Routine Maintenance

· · 6 Comments

On Monday, I saw my rheumatologist at Boston Medical Center—regular appointment, well-timed. It’s been a tough couple of weeks, pain-wise, between my back issues and very irritated digital ulcers. So there was a lot to discuss, first with the Fellow, and then my doc.

But, in the end, it all came down to basics: Yes, I have a muscle spasm in my back that will take more time to heal on its own. And, yes, my seven finger ulcers and left ankle ulcer are taking forever to heal, per usual. No real options but to be fastidious in my care and wait for warmer weather. My infected knuckle has cleared, and I can stop the antibiotics. An X-ray of my left thumb revealed a galaxy of calcium deposits. At present, they don’t hurt, and it doesn’t make sense to undergo more hand surgery to remove them, because the trauma caused by the surgery would probably be worse than just letting them float for now.

My right eardrum is not vibrating properly according to a hearing test I had recently, due to an inflamed eustachian tube for the past year. But my doc agreed with my assessment that the procedure recommended by the ENT—which involves inflating the eustachian tube with a tiny balloon—is not worth pursuing because the research I dug up stated that it probably requires a general anesthetic, given my very narrow nasal passages, and is only successful 30 percent of the time, with no proof of lasting effects.

I decided to pass on a back X-ray recommended by the Fellow to check for any skeletal issues, because I’d already had one X-ray that afternoon of my hand (enough radiation exposure for one day) and there wasn’t any real indication of bone issues with my back pain. I accepted a prescription for medication to relieve the muscle spasm. Can’t hurt to try it overnight and see what happens. It only cost $1.42. I picked it up on my way home, along with a couple more thermal packs for my back. (Thank goodness for those thermal packs—only way my lower back could withstand the 100 mile round trip drive.)

The best thing I did for my back last week was to get a good electric heating pad, rest, read and do stretching exercises. The best thing I did for my sore fingers was to stop typing. There is no magic pill for any of this stuff. Only a boatload of patience, common sense and determination to keep on going.

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.

In-between

· · 2 Comments

On Tuesday, I turn 63. It’s one of those in-between birthdays, halfway from the momentous 60th to the liberating 65th (assuming Medicare doesn’t disappear in the meantime). The forsythias are in full bloom, at last, and the maples lining our street have flowered—prompting my annual early spring allergies or a cold, I’m not sure which.

Even still, I’m grateful for the trees’ chartreuse tinge, the daffodils in our neighbors’ yards, the violets, the tulips reaching skyward. My birthday falls on the last day of Passover this year, and I’m looking forward to some real cake when we go out for dinner in the evening to celebrate.

These are small pleasures. It’s essential to savor them when headlines blast bellicosity. Anticipating my birthday a year ago, I could have never imagined we would be wondering if North Korea really intends to fire nukes at Seattle, or whether the U.S. successfully sabotaged Pyongyang’s missile test this past weekend.

If history is any teacher, much as I would like to ignore the news, we need to pay attention. I have spent much of the Passover holiday reading the haunting memoir of Stefan Zweig, a Jewish Austrian playwright, novelist, poet and essayist who chronicled the destruction of Europe during the two World Wars in The World of Yesterday. (That 1942 memoir and some of Zweig’s stories inspired Wes Anderson’s 2014 film, The Grand Budapest Hotel.)

One of the most famous writers of the 1920s and 1930s, until his literary career was destroyed by the Nazis and he was forced into exile, Zweig struggled deeply with the role of the artist in response to the politics of his day, when dreams of a better world crumbled into ashes. His questioning parallels my own internal monologue as our nation wrestles with the meaning and value of our democracy. He provides no easy answers, even as he strives to remain true to his principles of the uniting humanism of artistic endeavor.

Among many striking passages, Zweig recalls a mixed sense of calm and foreboding on his 50th birthday. The year is 1931. Having survived the Great War and ensuing impoverishment of Austria, Zweig describes contentment with his rebuilt life. He has achieved literary fame and comforts in his home in Salzburg. He has been inundated with gifts from his friends, who include many of Europe’s leading writers, artists and musicians. But something eats at his consciousness:

Strange to say, the very fact that I could think of nothing to wish for at that moment made me feel mysteriously uneasy. Would it really be a good thing, some impulse in me asked—not really my conscious self—for life to go on like this, so calm, well-regulated, financially profitable and comfortable, without any more tensions or trials? Isn’t it, I asked myself, wrong for your real self to be living this secure, privileged life? . . . Wouldn’t it be better for me—so I went on daydreaming—if something else happened, something new, something that would make me feel more restless, younger, bringing new tension by challenging me to a new and perhaps more dangerous battle? (Translated by Anthea Bell, University of Nebraska Press, 2009)

The tragedy and irony of that premonition is not lost on Zweig, who, by decade’s end, was forced to reclaim “a harsher, harder life from its ruins and rebuild it from the ground up.” I read these words, and I wonder, too, what’s in store.

The world feels fundamentally different to me on my 63rd birthday. I am grateful for so much—family, friends, home, community, creature comforts. Yet the accelerating pace of disruption overwhelms. Some days it’s hard not to get caught up in dark predictions. I struggle to find the balance between staying informed and staying sane. As Zweig wryly notes toward the end of his memoir (alluding to radio and the speed of news transmission), “The greatest curse brought down on us by technology is that it prevents us from escaping the present even for a brief time.”

Nonetheless, as Zweig speculated on his birthday 86 years ago, there is an immediacy and strengthened sense of purpose in a time like this. I feel as if my words matter more, now, than a year ago. I’m still finding my voice. I completed the first draft of my novel, which I have been writing for two-and-a-half years, about a month ago. It’s set in World War I. The parallels resonate more strongly than ever. The year ahead will be devoted to revisions, and new words, and finding the courage to say them.

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.

Image Credit: Portrait of Stefan Zweig, Austrian Cultural Forum

While the Soup Simmers

· · 2 Comments

I’m writing on Sunday night, as the Egyptian potato soup simmers on the stove and our community radio station plays a Middle Eastern mix. I’ve been cooking all day for our Monday night Passover seder, and I’m feeling good. A lot better than I anticipated this morning, when I woke with pain in my ulcers, an aching foot and one thought: How am I going to get through the cooking marathon today?

I groused at Al. I rubbed my temples. I studied the long list of fruits and vegetables that I needed to buy before lunch and realized I’d forgotten to ask Al to pick up one key ingredient from the kosher market in Brookline (an hour’s drive from home) several weeks ago.

He suggested checking the Passover aisle at our local supermarket, just in case they had those kosher-for-Passover hearts of palm. I agreed, then thought of an alternative in case they didn’t. I knew Al stood ready to serve as sous-chef, as need, for all the chopping and peeling ahead. Time to dive in.

To my astonishment, when I got to the store, the Passover aisle was still well-stocked, including hearts of palm—three cans, even. I moved on to the second supermarket and filled my cart with fresh strawberries, blueberries, blackberries, bananas, a mango, avocados, cauliflowers, leeks, romaine lettuce, potatoes, beets, onions, garlic, celery, parsley, asparagus, baby spinach, eggplants. At the check-out, the cashier admired my choices and told me how much he loves vegetables (except eggplants). I told him how to enjoy beets in a salad (add gorgonzola and toasted walnuts).

By the time I got back home, Al had switched over our kitchen to all of our Passover dishes—the culmination of several days of cleaning and preparation. We went out for a quick lunch, and then I began cooking in earnest. The night before, I’d already started the pickled salmon, which marinates for a couple of days. Next up was curried eggplant. I was able to do all the peeling and chopping myself while Al worked on the yard.

Then came the Egyptian haroset, a mixture of dates, golden raisins, ground almonds and sugar syrup. Only one problem: when I placed the mixture in my little Passover food processor, it wouldn’t turn on. I tried another electrical outlet. No go. I asked Al to try it. Maybe I hadn’t aligned it properly. Zip. Four o’clock in the afternoon, and it was time for another run to Target.

I opted for an immersion blender and picked up a few other cooking items to make life easier for the rest of the week. Before we left for dinner, the haroset was well blended, cooked to perfection and chilling in the refrigerator.

By 7:30, I was back in the kitchen, separating nine eggs for the apricot sponge cake and cursing at the little pieces of eggshell that had dropped into the whites. But I persisted. Al helped me fold the meringue into the batter, the one part of the recipe I can no longer do.

Now the sponge cake rests upside down in its tube pan, cooling overnight. The asparagus are happily plumped with water, standing tall in their pan until it’s time to steam them tomorrow afternoon. The potatoes and leeks and celery and garlic and turmeric, salt, pepper, bay leaf and water have finished simmering in the time it took me to write, and the lovely mix is now cooling in the 70-year-old white enamelware that was once my mother-in-law’s Passover soup pot. Just need to add the fresh lemon juice before serving.

All that’s left for tomorrow are the spinach-cheese patties, the avocado-tomato-hearts-of-palm-pesto salad, the roasted cauliflower, the boiled eggs and the seder plate. That’s the easy stuff.

The prospect of cooking for Passover, with my once-a-year set of dishes, the crazy schedule, and the inevitable stuff that goes wrong, always overwhelms—especially because the holiday falls in the spring, when my ulcers are at their worst. But somehow, it always works out. And tastes great. And provides a beautiful setting for our seder. This year, more than ever, I am grateful that I can still make a splendid feast for family and friends, and focus on what really matters: what it means to be free.

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.

Spring Tease

· · 1 Comment

I bought a bouquet of Irish daffodils on Friday, three bunches of slender stalks with buds barely open. By Sunday, they had bloomed, a vase of sunshine in our dining room. Outside, snow still covered the ground. I bundled up in my long winter coat, wool hat, scarf and mittens to brave the damp chill for a half-hour walk around the neighborhood. Winter is clinging, white-knuckled, to Central New England. It’s high time to let go.

In some ways, the spring-masquerading-like-February makes me feel like a bear that is groggy, awakening from a long winter’s hybernation. My finger ulcers are simply not healing, and they smart when I change bandages twice a day. My metabolism feels sluggish from the cold. It’s hard for me to get going in the morning, when the sunlight spells spring but the temperature remains in denial. I really had to force myself out the door on Sunday, but I was glad for the reward of a cleared mind.

But winter cannot supress spring forever. As I walked, I noticed a misting of pale green about some trees. The Callery pear in front of our house has white buds, too. Near the melting edges of snow, tender green blades of grass poke skyward. The earth smells muddy and ripe.

There is birdsong, too. On Sunday, beneath overcast skies, the crows dominated. But the day before, as I walked up the street, dozens of melodies filled the air. Exuberant birds trilled, tweeted, cooed. I wondered what they were saying to one another, and I was glad for their company.

So, I await warmer weather with impatience, yet reassured that nature’s rhythms prevail. Until the snow melts, I’ll fill my vases with daffodils and let the sunshine in.

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.