Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

managing chronic disease

Ain’t That a Groove

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Our three Hanukkah candles have burned down for the night. As I write, a pot of lentil soup is simmering on the stove, and James Brown is singing Ain’t That a Groove on our local public radio station.

Do you love me, yes I love you
Do you love me baby, yes I love you

Six days ago, once again, we in the Northern Hemisphere passed through the longest night of the year. Fat, fluffy squirrels chase each other up and down our maple tree. They seem quite hardy, despite the fact that I took down the bird feeder a couple of weeks ago with intent to rig it so they couldn’t keep stealing bird seed by the pawful. Awful. Poor birds. I need to take care of it, as the temperatures drop.

Do you love me, yes I love you, do you
I just gotta, gotta know

Last week I read an analysis of climate patterns that explained how unusually high temperatures in the Arctic are forcing the Jet Stream farther south, trapping colder air over Siberia and sending it our way. We’re in for a bitter winter here in New England. But Al and I are traveling south for New Year’s, escaping chilly air and fog-iced roads for a long, warm, relaxing weekend and a friend’s son’s wedding. Not long enough for all my digital ulcers to heal, but a welcome pause before diving into January.

Hey, ain’t that a groove
Ain’t that a groove let me count

2016 was such a tough year for our nation and the world. I approach 2017 with doubt and trepidation. But then I remind myself: yes, the days are growing longer, once again, minute by minute. It is the way of the Earth turning on its axis. As we travel inexorably along our parabolic path round the Sun, I want to believe that the long arc of progress toward the greater good will prevail. In any case, the radio host just announced that 2016 was the first year that vinyl record purchases outstripped digital downloads. I’m going to assume that’s not fake news.

One for the money, two for the show
Ain’t that a groove now here we go

May 2017 be a year to remember for all the best reasons. See you in two weeks.

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: Hoàng Duy Lê

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

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.

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

Fitful

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As Election Day arrives, I have found it harder to sleep. So much is at stake. I’ve been plagued by a low-level headache that flits from temple to temple. I’m exhausted at night but can’t easily turn off my mind. Regardless of the outcome tonight, our country faces a very contentious future that will take a long, long time to heal. More stress is guaranteed.

7736889972_edcee6db5c_oThere is only one silver lining to this mess: I will finally get in shape. Why? Because I discovered last week that the one way I can get rid of my tension is to work out. Al and I at long last got back to the gym Thursday night. I walked a mile on the indoor track, rode 2.3 miles on the stationary bike and listened to a podcast that had nothing to do with politics. Voila! My mood improved. Nothing like putting one foot in front of the other or pedaling, pedaling, pedaling to push out the stress.

On Friday, Em got me away from the computer to take a half-hour walk around the neighborhood—something I have been neglecting recently as I’ve focused on work deadlines and read too many election analyses. On Saturday, we all joined Al’s brother and his extended family and friends for a three mile Boston VisionWalk in memory of Al’s nephew, who died all too young, two years ago. It was an uplifting way to get exercise and do some good in the world. I devoted Sunday and Monday to board meetings for The Good People Fund, which supports creative individuals who tackle hunger, poverty and other seemingly intractable social issues at the community level, with amazing, positive results. All of this was the best I could do to counter all the hate speech and negativity swirling around us. It helped me sleep a little better.

As I write, I have no idea how the election will turn out. I am afraid for our country. I am praying that sanity and compassion will prevail, that innuendoes and guilt-by-association will be debunked, that each of us will think beyond our own needs and concerns to do what is best for our society and nation as a whole.

And I will keep on walking, keep on walking, one foot in front of the other.

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: Ryan McGilchrist