Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Body

Stand Tall

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My posture has been lousy of late. Maybe I’m slouching in front of the computer too much. Or maybe it’s because it’s been too cold out and I’ve been fighting with a recalcitrant ulcer on my left ankle that’s made it harder to take a daily walk. Or maybe it’s just the collective weight of so much discouraging and downright frightening news that feels like a barbell on my shoulders.

Whatever the cause, I need to remind myself to straighten up, stretch my spine and hold up my head. Can’t face the world with a chronic stoop and cower. Nope. Especially not now.

So here’s my antidote, just in time for the holiday weekend: three gifts of inspiration that I share with you. I hope you enjoy these as much as I did when I discovered each one—and that you find yourself walking a little taller, stepping a bit lighter, as a result. And please, pass them along to anyone who could use a little uplift, too.

  1. Artist Christine Sun Kim’s TED Talk: The Enchanting Music of Sign Language
  2. On Being with Krista Tippett: Interview with Vincent Harding, Is America Possible?
  3. Tap v Irish Step Dance (Sorry, couldn’t find the origin of this YouTube video, but it’s a great performance!)

May your holidays be blessed with good company, much laughter, health and peace.

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: Ian Schneider

It’s Up to Us

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There’s a lot going on in scleroderma research, particularly regarding efforts to understand the causes of fibrosis—what makes skin get too thick—as well as possible treatments. Just this October, a study published in Arthritis Research & Therapy found that “two approved treatments for pulmonary arterial hypertension— Tracleer (bosentan) and Opsumit (macitentan)—can block a molecular pathway that promotes fibrosis in systemic sclerosis (SSc), and may be a potential therapy for these patients as well, according to an early study.” You can find a summary of the study here, on the Scleroderma News website.

I’m particularly interested in this study, because I have taken Tracleer for years, and I noticed within a few months of starting this medication that skin on my face and backs of my hands had loosened a bit. I’ve discussed this with my rheumatologists, who agreed with my suspicion that the Tracleer may have been responsible. One note of caution: this is a very expensive drug. You need good health insurance to pay for it. But the study results are certainly encouraging. Not my imagination. Not by a long shot.

Path-breaking research into the causes of scleroderma, as well as the ongoing search for a cure, depends on all of us to contribute in any way we can—with financial donations as well as participation in research studies. As December 31 draws near, I hope you’ll join me in making a gift to the scleroderma organization of your choice. Here are some links:

We may not see a cure for this cruel disease in our lifetimes, but progress is being made. Each year brings more insight and increasing hope that we will get the answers, sooner than later. Thank you for your help.

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: Connor McSheffrey

First Snow

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img_2491It’s always a surprise, that first coating of white. This year, it arrived on Monday, just an inch, already melting by mid-afternoon. But the flakes fell softly in the morning, fat, puffy, like thousands of tiny parachutes drifting earthward. Clinging to evergreens, disguising flaws, the snow absorbed sounds as it fell, hushing the world, slowing all down.

Mid-morning, as snow continued to fall outside my window, I was on a video conference call with people in New York City (rain), the Catskills (snow) and the Netherlands (almost never snow). The two young daughters of the Dutch woman overheard us discussing the weather and asked to see. My client in the Catskills turned his computer around to give them a peek of his blanketed yard. Their eyes widened with amazement.

By early afternoon, I had to go to the post office to mail some packages. Should I wear boots? I tried to slip on my rain boots but had to pull them off again. A few weeks ago, I kicked myself in the inner left ankle, one of those slips of coordination that occasionally plague my stride. This has morphed into an ulcer, then a rash from bandage adhesive. I saw my podiatrist last week, who prescribed steroid ointment and compression socks, and explained how weakened veins in my ankles are exacerbating the healing process. Which is why I couldn’t wear the boots. I opted for walking shoes with good treads. I’m hoping the ankle will improve by the time the serious snow falls.

Two o’clock, when I returned home, the sun was shining, the snow compacting as it melted. My footprints revealed slate. I shed shoes for slippers, ate some soup, forbade myself from reading any more news and got back to work. I didn’t notice the sun setting and the darkness settling in.

Winter is coming, and cold, and ulcers, and more snow than I want to contend with. The days grow shorter and darker. Headlines weigh on my heart. But halfway around the world, two little girls giggled at the novelty of a world transformed by white. I did the same when I looked out my window Monday morning. Let there be Wonder.

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.

50 Shades of Brown

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On Thanksgiving weekend, Al and I took to the woods for an afternoon hike. Most of the trees were barren, their leaves forming a soft, subdued tapestry beneath our feet. Along the trail, there were still hints of green—a tuft of grass, a patch of lichen. But my favorite meditation on a late November walk is to study the subtle browns of autumn’s end: caramel, ginger, cinnamon, umber, burnt sienna, slate-brown cedar, the warm copper of an old penny. Such stunning variations on a theme. And the perfect antidote to tense times.

For you, Dear Reader, here is a sample of what I saw. Relax. Enjoy the view. And be sure to play the short video at the end.

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(If you can’t see the embedded video, click on this link.)

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.

Falling Leaves

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See how efficient it is,
how it keeps its shape—
our century’s hatred.
How easily it vaults the tallest obstacles.
How rapidly it pounces, tracks us down.

from “Hatred” by Nobel laureate Wisława Szymborska

Cruel words, cruel acts eddy and swirl in every corner of our country since Election Day. I await our president-elect’s forceful denunciation of the hate speech and hateful acts being committed in his name. Two weeks and counting.

I take comfort in the many acts of kindness and caring by everyday Americans to censor those who feel emboldened to say and do what they have apparently been thinking all along. This gives me strength.

I feel wary. Will I be a target of derision, with my long pinched nose and tight mouth and awkward hands that slow me up at the checkout counter, while others wait? It is not a question that I have ever considered before. When I was grocery shopping on Friday afternoon, a man with tattooed arms hovered nearby while I rang up my items at the self-checkout lane. He kept moving closer, then stepping back, impatient. He said nothing. He did not make eye contact as I moved to the side to finish packing my bag. Before the election, I would have simply thought he was in a hurry. Now, I am not so sure. Or, perhaps, I am the one who is judging him unfairly.

Fears hover beneath the surface of normalcy. Thanksgiving is coming and I don’t feel celebratory. But I want to. I want to enjoy the holiday with my family. So I turn my focus to my many blessings: my loving husband and adult daughters, the warmth that greets me when I step inside our home from the approaching cold of winter, our quiet street, supportive friends and community, my clients who entrust me to promote their good works, the freedom to express my own truths through my writing, my art.

I am grateful for our great country, for all its fault lines and bitter conflicts. We can do better. We must.

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: Timothy Meinberg